I was diagnosed with Graves’ disease in 1999 and eventually had radioactive iodine treatment. This seemed to work and I have been having yearly blood tests to monitor things.
18 months ago I hit menopause (I’m 54) and my skin became really dry to the point of eczema and puffy swelling around my eyes and around my neck. I was referred to a dermatologist and asked my GP to test my thyroid again. I was told it was normal - no action necessary.
My skin has got gradually worse, my eyes are dry and I have drops for them from the ophthalmologist. I am extremely anxious all the time and I have an enlarged thyroid. My GP says no thyroid problem would do that to my skin and refused to run another blood test so I paid to have one.
Results
TSH 0.121 (normal range 0.27-4.2)
Free T3 5.95 (normal range 3.1-6.8)
Free thyroxine 17.7 (normal range 12-22)
My GP still says no further action is necessary even with my Graves history and I’m now thinking of going privately as I can’t carry on like this.
What would you do?
Thanks x
Written by
Wusskat
To view profiles and participate in discussions please or .
Can you add the ranges to those results, please? Otherwise, they are meaningless, because ranges vary from lab to lab.
Your doctor is totally wrong about the thyroid and skin. If my thyroid hormone levels drop, the first thing that happens is that my skin turns to scales! I look more like an alligator than a human being! Dry skin can be a hypo sign, but I don't know if hyperthyroidism can affect it in the same way. Trouble is, doctors do not learn about signs and symptoms in med school.
It's not the TSH that is important. And, if you had Grave's, could be that it will never get much higher.
Your FT4 is only 57% through the range, and your FT3 77.03%. So, whilst your FT3 is slightly higher than one would expect from the TSH (one would expect the TSH to be lower, actually) it's not in the least hyper. So, at the moment, there's not an awful lot that can be done. I'm not an expert, but it seems to me that anti-thyroid drugs would be inappropriate at this point. They would rapidly make you hypo. But, your levels do need keeping an eye on.
How was your Grave's diagnosed? Did you have the TRAB or TSI antibodies tested? I take it you still have some working thyroid left, it wasn't totally destroyed?
Have you got the ranges for those results? Your TSH seems a little low but mine is quite low at 0.38 but I feel well at the moment. I was told I have Graves’ by my Consultant Endocrinologist. I was treated with PTU and I am in my second remission. Have you seen an optician about your eyes? I have seen one because I was worried I might have TED.
You might be slightly hyper and that is affecting your skin. I would ask on Elaine Moore’s site she helped me a lot when I was very ill and my TSH was 0.002. If you google her name her site will come up.
It's not having a low TSH that makes you ill, it's high FT3. And yours isn't that high. It might be too high for you, but if you had Grave's before, with very high FT3, that seems unlikely.
Well it made me feel ill ...because when my TSH was 0.80 I felt underactive now my TSH is 0.38 I feel well. Everbody is different gg and sometimes blood results don't give a good idea of how we actually feel. Hopefully the OP will join Elaine Moore's site because she knows a lot about Graves' disease.
I am well aware that everyone is different, but the fact is that the TSH does not make you feel anything, it doesn't cause symptoms whether it's too high or too low. It is the T3, the active hormone, that causes symptoms, makes you feel well or makes you feel ill, not the TSH - Thyroid Stimulating Hormone. TSH is just a chemical messager from the pituitary to the thyroid, to tell it to make more hormone.
You did tell me my T3 was too low gg but it was high enough for me to feel well. We are not experts on thyroid disease and I don't pretend to be one I just pass on what I have learnt over the last 10 years and I learn something new every day. I have requested my medical records from my Endocrinologist who treated me 10 years ago he might not want to give them to me but I will see what he says. I am interested to see what he has written about me and his original diagnosis.... once I get them I will share them with everyone on this site.
You don't have to be an expert to know what TSH does and doesn't do.
The law says that you are entitled to your records. If your doctor refuses to give them to you, then he is breaking the law and you can take steps to force him to hand them over.
I do know this gg but the NHS is very powerful and records can get lost or misplaced. I worked in medical records and sometimes Consultants would sign them out and we never knew where they were and some results would go missing etc. I am hoping that I do get them but we did not part on good terms after he offered me counseling when I told him I felt very ill. I walked out of his clinic and he then discharged me ... he was a very arrogant man.
Important to test vitamin D, folate, ferritin and B12 , plus both TPO and TG antibodies to rule out Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have Graves or autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Sounds like RAI didn’t work, normally thyroid packs up completely and you start on levothyroxine
I have Graves Disease diagnosed 2003 and had RAI in 2005 and immediately put on Levothyroxine x 100 mcg. daily.
Were your symptoms alleviated after ingesting the RAI ?
As I understand things RAI slowly burns out the thyroid in situ and that as your thyroid is destroyed you get replaced with the synthetic thyroid hormone T4, Levothyroxine.
So as it stands, it would appear that your own thyroid gland is still functioning and your blood tests shows a good level of naturally produced T3 and T4. with your TSH low but that is common in Graves Disease patients and your bloods don't appear to be ' hyper ' .
Graves is an autoimmune disease in which your own immune system attacks your thyroid ,and being that the thyroid is such a major gland this can present with a myriad of symptoms, some predictable and others seemingly totally unrelated.
There is a specialist website in the States for Graves Disease, and the founder Elaine Moore, is a medical researcher who has the disease and went through RAI in the 1990's.
Do you recognise any of these symptoms that you are now having to deal with from before you had the RAI treatment ?
I can only think that your dose of RAI was just enough but not enough to destroy the gland, thereby leaving you totally reliant on synthetic thyroid hormone replacement, as what happened to me, and many others that I read of on here and other places.
I can only then presume your gland has regenerated itself, which has led to your experiencing similar symptoms to that of some 20 years ago.
Whilst your T3 and T4 are in range, I doubt your doctor will be able to run a blood test for the Graves antibody but it might be interesting to see if it's currently active and raised.
I think you can action this yourself, through the blood companies as advertised on the Thyroid uk website - you might need to contact them first and ask specifically for the TSI and or TRab blood test for Graves Disease, as I don't think it ' pops up ' on the main options.
Do you have blood tests from when diagnosed detailing a positive TSI / TRab antibody blood test ?
P.S. Yes best to keep a foot in each website - this UK site is amazing and Elaine Moore has all the research, alternative and holistic approaches to hand through the various sections within her platform.
Hi, I have TED (mild) & got great advice from TEDct-the telephone helpline was supportive & free information pack informative. I use HycoSan Extra drops & also supplement with black seed oil & lutein & zeazanthin (Eye complex 7- from Amazon) which has really helped with dryness. I take 200mcg selenium. I wear reactive glasses to limit sunlight/ glare. If my eyes are very puffy my Endo prescribed furosemide diuretic. Remember to keep posting if you need further advice!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GP won't diagnose despite abnormal test results, what should I do next?
Hashimoto's? Should I be taking T3?
Should I be on meds?
What shall I say to my Gp next week? Any guidance would be greatly appreciated 
Advice on ‘normal’ test results 
