Newcomer with RA and hypothyroid- need help

[Carolyn]

Thanking everyone in advance who reads my post and offers suggestions as I am feeling overwhelmed. I’m 63 years old, diagnosed in August 2014 with RA based on labs, no symptoms. RF factor >120, ses rate 48, CCP antibodies >250, ANA – negative. No treatment recommended by rheum until symptoms present. October 2014 borderline high for thyroid disease. Doc said recheck labs April 2015, no treatment started. I felt pretty good I thought until March 2015 when started having problems with sleep, had gained weight and little energy with some stiffness in hands and random muscle pain. Diagnosed in April 2015 hypothyroid with TSH of 9.12 and started on levothyroxine 25mcg. Started sleeping better and had more energy. Doc said RA and hypo overlap so we agreed to get hypo under control to see if my symptoms were a result of hypo. Continued to increase my dosage of meds as my TSH dropped to 3.13 by November 2016. Now taking 88mcg but doc said my level at 3.13 is within normal level so meds will stay at 88 mcg. Revisited rheum doc later in 2015 as my hands got worse with pain and stiffness. She told me it was time to start methotrexate but I declined until I knew more about RA and treatments.
Last summer, I came down with pneumonia and took 3 rounds of antibiotics to get well. Since then, it seems I have never bounced back 100%, as I have struggled with extreme fatigue again, joint pain from hands to feets and at times all over. Hands have gotten stiffer and swollen and can’t make a fist. I stumbled upon Road Back in 2015 when I began searching for alternate ways to treat RA. Since then I have been looking for a doc that would agree to the AP protocol. Saw a different rheum doc in January 2017 and she said she would not agree to let me try it because it would be ineffective since it only helps people with mild RA. I finally found an integrative doc right in my area and saw her in March 2017 and she agreed to the antibiotics. She did labs and did a total thyroid panel saying that my thyroid could still be causing me problems since my TSH was still around 3.
My RF factor this time was 100, sed rate 78. TSH was up to 3.21 with T3 at 2.8 and RT3 at 25. Mycoplasma pneumoniae positive at 1.51 IgG. My vitamin D was 35.
She put me on magnesium, vitamin d 5000, and recommended selenium for my thyroid. She wants me to start cytomel(generic)now at 5 mcg daily and minocycline at the same time. I have Torrent capsules 50mg and want to start low and slow. She originally suggested 100mg twice daily but I told her that I would feel better starting with the 50 mg.
I’m mentioning all of this as I’m concerned with my thyroid meds that adding another one may be too much. I don’t know if my pain and fatigue is from thyroid or RA. Up until about a month ago, I only had to take ibuprofen one or two times a week for pain but now need one or two daily. I saw on this forum in past posts I was scrolling through that there are some of you with advice on being hypo and treating it along with RA. I don’t like taking the ibuprofen now daily and wonder if I should start taking another anti inflammatory along with the antibiotic.
I appreciate any help or suggestions with anything I have mentioned. I thought it would be so easy once I found a doc to give me the antibiotics but I’m now feeling more confused and hesitant. Sorry this turned out to be longer than I planned. I now have pain and or stiffness in hands, feet and knees sometimes with the extreme muscle pain at times in my arms. I am exhausted by the end of the day.
Also just wondering if having high levels of EBV is linked to RA.
Carolyn

Diagnosed 2014 RA and hypothyroid-no symptoms
2015-symptoms start and start treatment for thyroid
MTHFR- one copy of A1298C
Mycoplasma pneumonie, Ab, IgG
EBV- VCA IgG, EBV-EAIgG, NA igG
Current meds:Minocycline - Torrent 100 mg MWF- 2x, Levothyroxine 88mcg, Liothyronine 5 mcg - 2x daily Ranitidine 150mg -2x, Nasacort, ibuprofen-200 mg daily - nothing for pain since May 2018
Supplements: Thyrolife Optima, Fish oil, vitamin D -5000 daily, magnesium glycinate- 100 mg, probiotic 25 billion
Food sensitiv

[whaleharbor]

I know that other with much more knowledge than me will soon chime in. But I want to tell you this…for me…I had RA for about 20 years before I found AP. My doctor called it severe. I went into remission with AP in less than a year (I honestly don’t remember). I had a recent hiccup after 9 years in remission (pharmacy changed my generic to another one) and almost immediately flared severely…now just 2 months later…I’m feeling like I’m almost in remission again. I’m not saying that it works for everyone…what do I know…all I can say is for me…it has worked – twice.

Meanwhile, I know others on here will answer your questions as to their experience with RA and thyroid.

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Maz]

Hi Carolyn,

Sorry to hear you’re feeling overwhelmed, but this is just to say you aren’t alone and it is all very overwhelming at first, but you’re in good company in this forum, because we get it. The very good news is that you’ve been asymptomatic, though seropositive, and Dr. Brown was a believer in getting started on AP nice and early to offset the risks of joint and other tissue damage.

The symptoms you’re describing sound to be more hypothyroid at this stage, which I can relate to! Have you read the blog on the main site and read through the linked material in the following article?

Your Thyroid and Rheumatic Disease

Thyroid overlaps are more common than are probably recognized, as most of the time, when someone gets their thyroid checked, only TSH will be tested. This is not enough for rheumatic patients who commonly deal with inflammation, iron-deficiency or pernicious anemia and low Vit D3. All these co-factors can prevent proper conversion of the inactive, storage hormone (T4 replaced with levothyroxine) to the active hormone, T3. So, rheumatics may well be sub-clinically hypothyroid, even if their TSH is in a good range of .5 to 1.5. Your TSH is still a little on the high side and certainly not optimal for a rheumatic patient. As symptoms of hypothyroidism can mimic RA (muscle and joint pain with tendonitis), it is vital to ensure everything is not just “in range,” but in a range that is more ideal for someone with rheumatic disease. As your SED rate is elevated (what about CRP?), indicating inflammation, it would be a good idea to also be tested for thyroid auto-antibodies (anti-TPO and thyroglobulin) to check thyroid disease type, but to ensure regularly testing of your Free T4 (what is free in your system) and Free T3 (what is free for proper thyroid conversion – Total T3 is a measurement of both bound and Free T3, which doesn’t give an accurate picture of how well you’re actually converting). A Reverse T3 of 25 is quite high, which is common in folks with inflammation, but this number is like a braking system. It’s telling you how much of your replacement levothyroxine is being shunted into an inactive form of T3 that your body can’t use. Ideally, it should be <10. However, the ratio of Free or Total T3 with Reverse T3 gives a better idea of conversion capability. You can find a calculator for this on the STTM website here, but you will need the units of measurement that your lab uses and make sure you click the right ones after you input your lab results, using the dropdown menu:

T3/RT3 ratio convertor

This link explains what Reverse T3 is and why it’s important to measure it, as well as co-factors that might need addressing:

Reverse T3

Getting your thyroid in good shape could be pivotal to improving how you feel and adding the T3 med (brand = Cytomel and generic = liothyronine) should help enormously. In fact, I have a chart of my rheumatoid labs and when I added the first 5mcg liothyronine and, 6 months later, the second dose of 5mcg per day, and both times I saw huge drops in my RF and anti-CCP labs. I think this is because the active T3 thyroid hormone increases cellular metabolism and kick-started my antibiotic therapy again, which was lagging due to years of struggle with a toxic goiter (thyroidectomy 2 years ago). The dynamic of my AP has changed swiftly since getting my thyroid meds balanced and, not having a thyroid, this couldn’t be more evident now just how much a sick thyroid can influence pain levels. In fact, I have witnessed many on my thyroidectomy support group who don’t have a rheumatic disease, but suffer from terrible rheumatic-like symptoms until they get their thyroid meds right. So, can’t stress enough how critical thyroid balance is in rheumatic disease – not just “in range” balance, but “ideal range” balance.

An important thing to know is the Cytomel will artificially lower your TSH, making it look very suppressed, and this freaks out a lot of docs. It’s a very short-acting medication, with a short half-life in the body, so many “in the know” will advise to get thyroid labs drawn before taking any meds on lab draw day. This means getting up very early to get to the lab (hard if stiff in the morning) and wait through all the long “fasting patient” line-ups, so making an appt is a good idea, so there is no long waiting.

Also, hopefully your doc told you not to take anything with minerals within an hour of levothyroxine or several hours within taking cytomel, especially calcium. I usually set my alarm for 6am to take my levothyroxine, then roll back to sleep for an hour before eating breakfast. Tetracycline antibiotics also need to be spaced well away from minerals, as they are chelative and bind to minerals, which can render them useless in the gut. So, being sure to space things well apart, including probiotics from your antibiotic doses, is good practice.

One pointer that may be helpful to you is that if you do have autoimmune Hashimoto’s thyroid disease that many experts are claiming that cutting out gluten from the diet (to heal leaky gut) can help enormously with reducing the attack from leaking gluten proteins and an inadvertent immune attack on the thyroid, as the gluten protein looks very similar to thyroid tissue. Ironically, some thyroid meds contain gluten as a binder, so checking yours doesn’t with a pharmacist can be important. In fact, I switched to brand Tirosint, which is levothyroxine in a gelcap formulation. It’s better absorbed, I found I needed less medication, and there are no naughty fillers.

Is Your Thyroid Medication Gluten-free?

This all must add to your feelings of being overwhelmed, but in a few months all of it will be second-nature! Stick around here and check in to read posts and search old posts for questions that arise and you will feel like an old AP pro in no time, helping others with things you’ve learned. Knowledge is power, so staying on top of the learning curve will bode well for a swift response, as you learn how to support your therapy and why sometimes things need to be tweaked to individual needs. Your low and slow approach sounds very wise to begin. See how you go and your community here will chip in when you need it.

I’ve been on generic liothyronine (T3) since last year and just recently switched to a compounded version that is slow-release. Wow – what a difference this has made, too! T3 releases very quickly which can give rise to palps and other hyper symptoms when it reaches peak serum levels. So, trying the slow-release version has been eye-opening in this regard, as there is no up and down throughout the day and I feel like my overall metabolism is more on an even keel. You may be perfectly fine on your current Cytomel, but this is just to say that this, too, can be tweaked with a compounded slow-release version if you find you get any unwanted side-effects from your T3 med.

Hope something here helps, Carolyn!

[Carolyn]

Thank you, Maz and Whaleharbor for your response. It’s so encouraging to hear about your remission, Whaleharbor, but sorry to hear about your issues when your pharmacy switched your generic. I hope you continue to improve. I see from reading past posts from others that they have also experienced flares when switching generics. This forum is so helpful for newcomers and I am thankful to be here. I know now in advance to be very careful when i get my medicine refilled.
Maz, I appreciate all of your helpful suggestions. You mentioned CRP and I found that it was checked in 2014 when I was first diagnosed and it was 0.7mg/L. I do not see in later labs that it has been checked again. I’m not familiar with what this means for RA. I did fail to mention in my previous post that my thyroid antibodies were checked in March 2017 with the integrative doc and I was at 28 for TPO and 1 for thyroglobulin. Free T4 was 1.3 and free T3 was 2.8. I also forgot to mention that I did go gluten free in January 2016 and cut out most of my food sensitivites after I was tested in 2015. I still haven’t eliminated coffee, but I am now weaning myself off of it before I start the minocycline. I didn’t want to start the minocycline at the very same time as the liothyronine, so I thought I would wait a couple of weeks to start the mino in case I had any reactions to the liothyronine.
I started 5 mcg of the liothyronine on Saturday and the doctor said in one week to increase it to 10 mcg. I am taking this in addition to the 88
mcg of levothyroxine that she kept at the same dosage as I was already taking. I’m hoping for good results by adding this to help my thyroid reach an ideal range. It’s good to hear how much it helped you in lowering your levels for RF and anti-CCP! The doctor did mention spacing of these medicines and as I increase and take another drug and another, I’m finding it harder to get them all in the day. I get up at 4 am usually to go to the bathroom and that’s when I am taking my levothyroxine so that I can switch my vitamins to breakfast since I am now taking the liothyronine at lunch. When I increase it to 10 mcg next week, what are the best times of the day to take it so that the medicine stays even throughout the day?
You do have a lot of great information to share and that is so helpful. Thank you for your suggestions.

Diagnosed 2014 RA and hypothyroid-no symptoms
2015-symptoms start and start treatment for thyroid
MTHFR- one copy of A1298C
Mycoplasma pneumonie, Ab, IgG
EBV- VCA IgG, EBV-EAIgG, NA igG
Current meds:Minocycline - Torrent 100 mg MWF- 2x, Levothyroxine 88mcg, Liothyronine 5 mcg - 2x daily Ranitidine 150mg -2x, Nasacort, ibuprofen-200 mg daily - nothing for pain since May 2018
Supplements: Thyrolife Optima, Fish oil, vitamin D -5000 daily, magnesium glycinate- 100 mg, probiotic 25 billion
Food sensitiv

[Maz]

Carolyn wrote:

You mentioned CRP and I found that it was checked in 2014 when I was first diagnosed and it was 0.7mg/L. I do not see in later labs that it has been checked again. I’m not familiar with what this means for RA. I did fail to mention in my previous post that my thyroid

This might be why it wasn’t checked again after this, because it was in normal range. However, labs tend to change over time and because CRP is a more sensitive marker for inflammation (says more about what is happening on the day of the blood draw than SED which is slower to change), it is worth keeping tabs on it, particularly in light of the overlap diagnosis of hypothyroidism (and inflam blocking thyroid conversion). Also when you begin your AP, it’s not uncommon to experience herxing, which can be short-lived or go on for months, so CRP can be a helpful marker of inflammation during this time.

Carolyn wrote:

I did fail to mention in my previous post that my thyroid antibodies were checked in March 2017 with the integrative doc and I was at 28 for TPO and 1 for thyroglobulin. Free T4 was 1.3 and free T3 was 2.8.

Okay, this is good…sounds like you had a comprehensive thyroid screening done. If you have lab reference ranges and the units of measurement that were used for your results, it’s easier to get a take on them, because every lab uses different reference ranges and units of measurement (annoying!). Actually, what I think might help you more is if I send you some thyroid charts to help with result interpretation. These are really easy graphic depictions to crosscheck lab results against and ideal ranges to aim for. If you send me your email address in a private message (PM, for short), I’d be happy to email these charts to you. Just click on my User Profile where you see my pic and then select Private Message.

Overall, it really seems like you have a great integrative doc helping you with your thyroid, Carolyn – they are like gold! You’re also being very wise to take the addition of anything new in a measured, stepped fashion. This will really help you to discern what is helping or not. I wish I had known about getting my thyroid sorted out early on as it might have saved a lot of struggle, but then I also wish I’d known more about detoxing when I started AP! LOL So, you’re doing great already and also getting your diet on a good track. So much now is coming out about the gut microbiome and how gut imbalances drive autoimmunity. Makes sense if we are eating foods that are feeding the bad bugs and neglecting to heal leaky gut. Just surmise on my part, but I also can’t help but wonder if the nasty herbicides and pesticides being used on our foods are leading to destruction of the mucosal lining of the gut where the delicate balance of the microbiome resides.

Carolyn wrote:

I started 5 mcg of the liothyronine on Saturday and the doctor said in one week to increase it to 10 mcg. I am taking this in addition to the 88

Good plan! The increased dose of liothyronine should change your TSH and lower it quite quickly. It doesn’t take long for liothyronine to kick in (unlike levothyroxine that can take up to 6 weeks to note changes in labs).

Carolyn wrote:

It’s good to hear how much it helped you in lowering your levels for RF and anti-CCP!

It will be very interesting to compare notes on this, Carolyn. I have wondered if it’s just a strange anomaly that I’ve experienced or if it would affect all RAers in the same way. It certainly would make sense that if someone is experiencing chronic inflammation and T4 can’t convert properly to help cellular metabolism, then this could very well be blocking the actions of bacteriostatic antibiotics – bacteriostatics being antibiotics that work intracellulary, like minocycline.

Mind you, the folks on my thyroidectomy support group also wonder what would happen during a zombie apocalypse, if we didn’t have access to thyroid meds! Think I’d prefer sinking into a coma than eating raw pig thyroid, though. Ewww. LOL

It’s a real pain timing all the different meds and supps, but in the end it becomes routine and not a bother – the thyroid meds and AP are the two pivotal ones to get right and then just fitting in the supps around those. I use my iPhone alarm, which works out okay…I just have to use the little plastic pill boxes for every day of the week and get them set up in advance and this helps in remembering what I’ve taken already.

Hang in there, Carolyn, and hopefully it won’t be long till you’re well on your road back to wellness. You’re so fortunate to be seeing a helpful doc right out of the gate as this can also alleviate a lot of the stress.

[Carolyn]

I haven’t been on this forum much lately, although I do check from time to time to read the new posts. I wanted to share an update to this thread since I last posted. I gradually started Torrent minocycline in July 2017, starting at 50mg on MWF once a day. I am now up to 100 mg 2 times a day on MWF, since April 2018. No herx when I started it or on any dosage increase although I did have quite a bit of pain and problems with using my hands and walking was painful. I have had labs since starting the Mino in December 2017 and again just now in August. I had already noticed that I was feeling a lot better most days and doing things throughout the day easier than when I started. I noticed that my fingers weren’t as swollen and painful so I tried putting my rings on again, and to my surprise, they fit! A year ago I could not get them on! Other things about how I was feeling, I started comparing to last summer and starting thinking that maybe I am getting better.
I wanted to post my labs from December 2017 and then again in August 2018. I would be interested in hearing anyone comment as to what may be going on. Am I hoping for too much or am I on the right track to continued improvement to remission? Do labs fluctuate up and down or once improvement starts will the numbers return to normal?
This group has been a blessing to me and provided me with so much info that has guided me,along with my fabulous integrative doc that has been treating me since March 2018. I thought I was feeling so much better and then when my lab results came back, I couldn’t help but think, is this too good to be true?

Sed Rate- started at 48 in 2014 when I was diagnosed with RA.
December 2017 Sed rate jumped to 74 – I was then taking minocycline on MWF once a day. RA very active doc said
August 2018- sed rate down to 39. Still high but coming down

C-Reactive Protein – was at 0.7 when I was diagnosed with RA in 2014
December 2017- jumped to 18.5 – doc told me after these lab results that my RA was very active
August 2018- down to 0.8

Hoping this makes sense and looking forward to hearing back from anyone who wants to comment.
Thanks so much!

Diagnosed 2014 RA and hypothyroid-no symptoms
2015-symptoms start and start treatment for thyroid
MTHFR- one copy of A1298C
Mycoplasma pneumonie, Ab, IgG
EBV- VCA IgG, EBV-EAIgG, NA igG
Current meds:Minocycline - Torrent 100 mg MWF- 2x, Levothyroxine 88mcg, Liothyronine 5 mcg - 2x daily Ranitidine 150mg -2x, Nasacort, ibuprofen-200 mg daily - nothing for pain since May 2018
Supplements: Thyrolife Optima, Fish oil, vitamin D -5000 daily, magnesium glycinate- 100 mg, probiotic 25 billion
Food sensitiv

[Pinkmoth]

It’s not too good to be true – antibiotics are truly an effective against these diseases. I am so glad to hear you are seeing these improvements.

In your original post from May 2017 you asked about EBV and RA. In case you missed some of the forum posts on this topic, this year there have been study results showing correlations between EBV and autoimmune diseases. Here’s one link: https://www.nih.gov/news-events/nih-research-matters/epstein-barr-virus-autoimmune-diseases

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Author]

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