I'm a complete newbie here. Bit of background. I'm transgender first of all.
For the past 9 months I have been progressively feeling worse and worse, and the hypo symptoms prompted me to get a Thyroid test from my GP which came back within range.
Still feeling all these symptoms that perfectly fit with Hypothyroid ( hair falling out, constantly tired, dry skin etc ) I decided to take matters into my own hands and pay for a test which also tested for thyroid antibodies.
My GP/doctor despite my symptoms doesn't think I need treatment. Another person on a Thyroid Board forum suggested that I have cancer and should get an ultrasound asap. Another doctor said he would treat me with Levothyroxine. I am utterly confused by every opinion and just want an honest assessment on what people think.
To me, it seems like sub clinical Hypothyroidism. But at the same time I'm not overweight, and my BMI is pretty normal.
I have tested for b12 and anemia which all seems ok apart from high Ferritin at 290 ug/l. White and RBC's seem ok too. I also tested for Celiac to rule that out also. Basically anything that could cause similar symptoms.
I would really, really appreciate any help from anyone who has been in a similar situation so I can get on the road to good health.
Thanks, Jen.
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krizzobizzle
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krizzobizzle Goodness me, someone on that other thyroid board is scaremongering.
What you do have is high Thyroglobulin (TG) antibodies which means you are positive for autoimmune thyroid disease. You can read about thyroid antibodies here:
You should ask your GP to refer you to an endocrinologist.
It's very likely that you have Hashimoto's. More usually seen with positive Thyroid Peroxidase (TPO) antibodies, but sometimes when TPO antibodies are negative there can be positive TG antibodies which confirms autoimmune thyroiditis. This is where the antibodies gradually destroy the thyroid. Hashi's isn't treated, the resulting hypothyroidism is treated. Few doctors attach any importance to Hashi's but you can help yourself to reduce the antibody attacks by adopting a strict gluten free diet which many members have found helps enormously. Supplementing with selenium L-selenomethionine 200mcg daily also helps, as does suppressed TSH.
The GP who said he would start you on Levo is the one who is talking most sense. Dr Toft, leading endocrinologist and past president of the British Thyroid Association, says when antibodies are present then beginning treatment with Levo will 'nip things in the bud'.
On this page of ThyroidUK's website thyroiduk.org.uk/tuk/about_... under "Guidelines for the Use of Thyroid Function Tests" scroll down a bit and it states:
"If thyroid antibodies are found, then you may have Hashimoto's disease. If there are thyroid antibodies but the other thyroid tests are normal, there is evidence that treatment will stop full blown hypothyroidism from occurring."
You could email louise.roberts@thyroiduk.org.uk and ask if she can point you to this evidence so you can print it and show your doctor. Unfortunately I don't have a note of it anywhere.
Positive thyroglobulin antibodies means you have autoimmune thyroiditis (Hashimoto's) which eventually causes 90% of hypothyroidism. There is no cure for Hashimoto's but many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
You aren't yet hypothyroid and adopting a gluten-free diet may help delay progression. TSH >2.0 does indicate your thyroid is beginning to struggle but NHS doesn't usually make a diagnosis until TSH is over range or FT4 is below range. Some doctors do consider having autoimmune thyroiditis is a mild form of hypothyroidism but your FT4 and FT3 levels are good so I doubt Levothyroxine will be beneficial at this stage. If you have a doctor willing to prescribe it you could try a 3 months trial to see whether symptoms improve. You could supplement 200mcg selenium and might find a thyroid supplement like NutriThyroid helpful if you can't get Levothyroxine prescribed.
I was desperately unwell with euthyroid (normal) thyroid levels and elevated antibodies but was told symptoms were non-thyroidal because I wasn't hypothyroid. Symptoms improved after I had a thyroidectomy which confirmed my opinion that they'd always been thyroidal and my doctors were wrong. I've subsequently read that euthyroid Hashimoto's can make one very unwell.
There is an increased risk of developing thyroid cancer when thyroglobulin antibodies are very high (in the thousands) but the over all risk is very low and negligible if you have no thyroid nodules or goitre. If you can feel any lumps or swelling in your throat and neck then it would be a good idea to request an ultrasound scan. Even if you have a nodule 95% will be benign.
High ferritin without supplementing iron can indicate inflammation or infection somewhere in the body. 290 doesn't seem unduly high, even a cold at the time of testing can elevate ferritin, and it could be due to Hashimoto's. Ask for ferritin to be retested in 4-6 months to see whether level has dropped.
I had a large thyroid nodule compressing my trachea so it was removed. Tumour turned out to be malignant so I had completion thyroidectomy 3 months later.
I don't think there is any risk but some doctors will throw a hissy fit claiming your heart will explode and your bones crumble to dust if you take Levothyroxine unnecessarily.
Body adjusts to hormone and stopping hormone slowly. It takes 7-10 days to absorb Levothyroxine before it starts working and up to six weeks to feel the full impact of a dose. Starting dose usually needs increasing every 6-8 weeks until thyroid levels are optimal. Symptoms can lag behind good biochemistry by several months. It will take around 8 weeks to completely clear your system of Levothyroxine if you stop taking it.
Its a difficult one. I started to have symptoms when my TSH reached 2 so you being ill at this level isn't that surprising to me - but I am assured it is relatively unusual. Of course they wouldn't treat me, and since I knew nothing about matters thyroid nothing else was tested, so I don't know if I had Hashimotos disease. I'm about 20 years further down the line, so no thyroid left now, hence no antibodies!
Is being transgender pretty stressful socially? Any kind of stress will tend to aggravate symptoms, regardless of what the illness is.
Hair loss is yet another thyroid symptom. You really do need a trial of medication!
My thyroid just died. Slowly. It is likely the result of some medication I took about ten years before the problems started. If only I had known then what the risk of thyroid damage really meant. But the consultant said casually that if it happened it was no problem, you just need a little pill every day.
Are you taking oestrogen? If so, how much? If you're taking it, I completely understand that you might not want to stop but depending on the dose you might benefit from being on a bit less. An excess of oestrogen depresses thyroid function. It's not something that any research gets done about - but I have a theory that many MTF folk end up with wonky thyroids - my partner certainly did (past tense because she died from cancer in June - we would have been married for 22 years this Saturday )
Omg I'm so sorry for your loss, thanks for reaching out. I hope it wasn't Thyroid cancer.
My estrogen was pretty high as I have been on injections. I didn't realise It could suppress thyroid function that much. It was over 900 pmol/l at last check.
Even then could it raise antibodies at all?
Maybe I should try and lower my estrogen first before getting on any thyroid medication?
Might be worth looking at that estrogen level first. Many doctors unfortunately just wouldn't make the connection between estrogen supplementation and thyroid function.
Are you prescribed your estrogen or are you going it alone?
I think the thing to know is that as you have antibodies at some point it's likely your thyroid is going to give up the ghost. But as Clutter said above, you aren't yet hypothyroid and you might be able to delay that. Not promising, but it's something to consider. But no, the estrogen has nothing to do with antibodies
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