Help me, please; my GP says that my thyroid is fine and being managed.
My Thriva report in May 2021 stated:
TSH level was 1.79 (1 - 2.5) and Free thyroxine (FT4) 17.1 (12 -22).
I had blood taken on the 20/10/21 as I have been feeling horrendous. My lymph nodes are elevated in my throat and armpit area, my joints hurt, the uveitis in my eye keeps flaring up, and I feel drained. I am expecting to have eye surgery next month because the uveitis treatment has caused damage to the lens in my eye. I feel overwhelmed at the moment.
My GP and the specialists at the hospital (ophthalmology, rheumatology and ENT) don't have any idea why I continue to have all of these problems. I feel it is because my thyroid is not being adequately managed.
Here are the results from the blood test carried out at the GP surgery.
I only took the folic acid because my Rheumatologist said I had to take it whilst I was on the Methotrexate and Sulphasalazine. I have only recently stopped taking this medication due to the adverse effects and as such will now stop taking the folic acid.
I had to stop folic acid after I stopped methotrexate even though my rheumy said I could keep on taking it. It caused me to feel absolutely awful. I was fine when I stopped. I hope all works out for you. So unpleasant when we feel down and out. Best wishes.
You might not be aware of this, but folic acid is NOT the same thing as folate, but many doctors think that folate and folic acid are interchangeable. This isn't true. Folic acid was only invented in 1943. No human or animal had ever swallowed folic acid before then. Instead they had got their folate (also known as vitamin B9) from vegetables and other natural foodstuffs.
Folate is needed by the body in order to make full use of vitamin B12. Folic acid has to be converted into folate before it can be used.
Many people with thyroid disease cannot do this conversion from folic acid to folate very well. So the effect is that unmetabolised folic acid builds up in the blood, unused.
As helvella mentioned in an earlier reply to this post, one of the better forms of folate is methylfolate, which is easily sourced on sites selling supplements (e.g. Amazon).
I have an annual test done with Thriva and for some reason, the FT3 wasn't done this year. I will have to check the package they have put me on. I have been diagnosed with a small patch of Psoriasis on my scalp, Uveitis in both eyes but more prominent in the right eye, osteoarthritis in my lower back.
I have joint pain affecting hands, feet, knees and elbows but they do not know why this is the case.
Ok well may I suggest you read my profile as you will see I have suffered joint amd muscle pain with several diagnosis of nothingness. I ask because the meds you are on do seem rather severe. It could well be likely that your t3 is on the low side. Just a thought.
There are definite links with osteoarthritis and thyroid. I know it is my cause of pain. The Psoriasis? Is it hair loss too? And I am afraid I know nothing about thyroid eye disease but your diagnosis of uveitis is fairly rare isn’t it? Hopefully someone will be able to come on who knows more about it so you can check if there may be a link??
Thank you, I will have a look at your profile. I was put on the meds because they are struggling to manage the uveitis. My ophthalmologist said that there is an underlying inflammation, unsure of what it is (not his dept) and until that is controlled, I cannot come off the steroid eye drops as this is protecting my vision. However, if I stay on them, I will keep getting cataracts and continue to have eye surgery. So I need to do my own investigation to try and work out which specialist can deal with this, so I can get the appropriate medication. It is an utter mind field.
Poor you GeorgieandBlu. You really are going through it.
I do have a friend that had graves and had eye issues. She has a blown Phil but her vision is fine and although she had steroids and they told her they didn’t know what causing that either. I am pleased to say she is ok now. The pupil remained and although affected both eyes it did all heal.
🤞🏻 Some knowledgable member will be on to comment. I would suggest a t3 test though.
Presumably you have Hashimoto’s (autoimmune thyroid disease) diagnosed by high thyroid antibodies
Endometriosis and autoimmune thyroid disease often go together
uveitis also linked to autoimmune
Are you on absolutely strictly gluten free diet
If not get coeliac blood test done BEFORE trialing
Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Hi. You poor thing, it sounds as though you are having a rough time. Has your rheumatologist diagnosed you with psoriatic arthritis? It may well be that the cause of a lot of your symptoms are related to the psoriasis and not directly the thyroid. It is another autoimmune disease and people can have both ( as well as other autoimmune diseases)
Hello, my rheumatologist has not diagnosed Psoriatic arthritis. She said that the amount of Psoriasis on my scalp does not allow for this diagnosis, even though I have siblings with the same condition. 🙄
Hmmmm. I am not sure the amount of psoriasis is relevant. Maybe have another discussion with him. You seem to be being treated for a significant arthritis whatever they call it. Good luck.
You need to run from this rheumatologist before he/she destroys your health more…. Im living the nightmare of undiagnosed PSA by under qualified Rheumatologist.
Seek out a Rheumatologist that deals with psoriatic arthritis…. If you have psoriasis you are 30% more likely to develop psoriatic arthritis and you have siblings with PSA.
Dermatologist isn’t qualified to deal with rheumatic diseases only the skin and yes they can prescribe biologics that will help both your skin and joints but in my experience they have no idea of the biologic backlash and this is why Im in my 5th year of pain.
Hi, you really need your T3 testing as well to know what is going on for sure. This will show you how well your body converts the storage hormone (T4) into the active and usable hormone (T3). Medichecks do a home test you can order online. I did this and took results to my GP and asked for an appointment with an endocrinologist on the back of them. Good luck
I second what Mollyfan has said- to me this sounds more psoriasis related than thyroid, particularly with the uveitis. Your rheumatologist doesn’t sound great. Sounds like Psoriatic Arthritis. Hasn’t your rheum suggested a DMARD like hydroxychloroquine ? Edit- sorry just re-read your post properly and saw you are on a DMARD already
My rheumatologist is referring me to their weekly meeting, she doesn’t feel the psoriasis is bad enough. There is no rheumatoid arthritis and she doesn’t know what to do.
PSA will not show up on any blood test and its truly a process of elimination based on X-rays and family history and you… You have psoriasis and uveitis I will bet you have psoriatic arthritis and if you don’t receive proper treatment it could and probably will get worse and it’s obvious you current medication is not working anymore and I love doctors who look at a person with psoriasis and say oh its not that bad… live a month in my shoes and get back to me about how bad it is or isn’t… jerks!
I will have to chase up whether I have PSA or not. I don’t understand how much psoriasis one needs to have for it to be classified as bad or damaging. It’s crazy that specialists think this way. If you have psoriasis, it will cause damage to your health irrespective of the quantity you have.
Hi there,So sorry to hear you are going through all of this.
I have recently decided that there is a connection between a low TSH result and taking other medications for pain - like NSAIDS and antidepressant medications for nerve pain. I noticed that shortly after taking 20mg duloxetine for nerve pain my TSH level dropped dramatically from 1.74 to 0.028 whilst taking the same amount of T3 medication.
Recently, I have also noticed a link with hair loss and taking ibuprofen for longer than six weeks. I have also noticed small lumps that wont heal on my scalp - never had these before and I’m convinced that its the NSAIDS doing this?
There is little data on duloxetine and Liothyronine medication and its effects on augmentation or depletion. There is a small amount of data on NSAIDS and T4 and T3 meds.
The reason I’ve mentioned this is that sometimes the other medications can alter your blood test results and make it look (often) like you’re on too much thyroid medication- but if they check the serum amounts of FT4 & FT3 they look like you’re not on enough. Some of these drugs fool the pituitary gland into thinking there’s too much thyroid medication - others actually reduce the effectiveness of the thyroid medication. Please see these scientific papers.
Just thought I’d flag these up to you. As I’ve had similar problems with doctors telling me I’m on too much thyroid medication and in fact intervened last year causing me to be very unwell.
Good luck and best wishes with resolving your problems.
Thank you for the links, i’ll have a read. We do sometimes have to read between the lines and work things out for ourselves. Ultimately we are the ones that know what is normal for our bodies and have a better idea of what is going on. I do not doubt that the medication I have been on will affect the uptake of levothyroxine. Interestingly the specialists prescribing the medication did not seem to think this would be a problem. 🤔
Hi again, They never do. I think sometimes the data isn’t available because some of the medications are relatively new. Also, there aren’t that many people taking a similar combination of the drugs.You may find that there are some links with your TSH levels and the your own medications. Good luck.
I am taking similar medication to you metherexate and cimzia a biological drug for rheumatoid arthritis and I am prescribed 5 mg folic acid once a week for clarification do you take the folic acid weekly ?
Initially, I took the folic acid once a week, but they checked my levels and said I had to increase daily. Have you found that your treatment helps? I couldn't stay on the methotrexate or sulphasalazine; the side effects are pretty horrendous.
I have been fortunate on my treatments been on metherexate for 24 years without a problem but had to try 3 biologicals before I found one with no side effects 2 of them induced Lupus temporary. However I have had lots of problems with thyroid for 8 months I have Hashimotos had it for 24 years also but this year has been very difficult similar to what you describe been seen by lots of specialists who could offer no explanation. It is very frustrating however the advice and help from this forum is very it s helping and I am in the early stages of optimising my nutrients.
I was on Stelara when I was diagnosed with thyroid cancer and I swear this caused my cancer I could taste the drug in my mouth every time I got my shot and I was always told “thats not possible “.
It’s possible that your having a PSA flare although you don’t say if you have PSA but you have psoriasis so more then likely you have PSA and especially with your Uveitis and joint pain ….. Sulfasalazine and Methotrexate “might” be messing with your thyroid I definitely had this issue with Stelara and taking pain medication can also raise kidney levels.
My PSA flare is so bad that Im currently taking Cosentyx and Otezla and both my joints and skin are doing much better… its very life sucking. Maybe its time to consider another drug for your Psoriasis.
I had blood tests done back in May as I was feeling very out of sorts tired,painful shoulder joints,kept crying for no reason,angry and irritable loosing weight.My mom had an overactive Thyroid so I thought that could be my problem.They only did the TSH test and that was 1.7 is that very normal or low/normal I’m confused!
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Is my TSH level at 0.43 considered low.
What level of Levo should I be on?
What tests should I be asking for?
Fluctuating between subclinical and overt hypo TSH levels, should and how do I get treated?
Low TSH. Within range FT3. Low T4. What is going on?!
