I don’t have an understanding doctor or never had a good endo in the past so I’ve been now on levothyroxine for 8 years now and over the past 3 years I’m struggling.
I’ve been having the most horrible morning stiffness and bone aches throughout the day and days where I get headaches, feel sick and generally feel unwell.
My hands are the worst I struggle to open them when I wake up.
I tried to go on natural desiccated thyroid at the beginning but ended up over medicating and felt scared as I have a heart condition so went onto level has told to do so but my endo.
I have now been referred to a rheumatologist to check for lupus as he did think it was rheumatoid as my brother has that but my bloods came back clear.
I have been having hives and a headaches when going in the sun and daily bone / muscle aches. I also get tendonitis in my shoulder, elbow and neck on a regular basis I also have a butterfly type rash come and go but I thought it may be rosacea. My hair I started also falling out as I have loads of new growths.
My thyroid bloods came back normal but they will only do the standard thyroid.
Advice if possible please.
Ali
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Alisbabas
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No, you really, really do not need an rT3 test. It's expensive and doesn't give any useful information. You can tell how well you convert by comparing the FT4 result with the FT3.
Testing TSH, FT4 and FT3 at the same time generally shows whether you would benefit from adding T3 to Levo. If your TSH is 1 or below and your FT4 is high in range with FT3 low in range, this shows poor conversion of T4 to T3 and that T3 may be useful.
However, before adding T3 it's essential to optimise all vitamin levels so you also need to test Vit D, B12, folate and ferritin.
If you can get all these tests done (with GP or privately with one of our recommended labs) then post the results, with reference ranges, members will be happy to comment.
I’ve been having the most horrible morning stiffness and bone aches throughout the day
As you know you have Vit D deficiency then this is very likely to be the cause. I had severe Vit D deficiency and I couldn't move my ankles when I got out of bed, I had to shuffle along. I optimised my level and now maintain it and have no further problem in that respect.
I had a liver function test and it was fine they said and also I think platelets and they were fine. I’m on vit D 1000 1 a day
BAV is bicuspid aortic valve and I have a mild enlarged aorta so I have to be careful of any overactivity with my thyroid as I have to keep my blood pressure as normal as possible.
I may look at get my labs done private and will they do with this virus at the moment?
I may look at get my labs done private and will they do with this virus at the moment?
Yes, but only offering fingerprick tests, or "arrange your own blood draw" which may be difficult.
I had a liver function test and it was fine they said and also I think platelets and they were fine.
Those are nothing to do with your vitamins.
I’m on vit D 1000 1 a day
Was this prescribed?
What was your Vit D level? You say you have a deficiency, that is normally diagnosed with a level below 25nmol/L.
If you do have a deficiency then 1,000iu D3 will do nothing to help raise or even maintain the level. Please post the actual result and I will point you in the right direction to work out how much D3 you need to take and the very important cofactors that are needed when taking D3.
If you were deficient you would have been given loading doses.
Were you originally given loading doses amounting to about 300,000iu over 6 weeks or so, then the dose of D3 was lowered?
Presumably you have not been retested by your GP, they tend to not do this. It is essential that you do a private test to check your level, then dose according to the result. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Come back with the result for further help with this. If you continue to take D3 then you need to take the important cofactors as mentioned above. The symptoms you mention suggest you may still be very low and need a lot more than 1,000iu D3 daily.
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 as you have Hashimoto’s
Ask GP to test B12, folate and ferritin levels
How low was vitamin D
How much vitamin D did GP prescribe
How long have you been on this and have you had levels retested?
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Are you currently on strictly gluten free diet or tried it?
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 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 over 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 and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and 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.
I have that book, I had a colonoscopy before they told me I had thyroid as when I gave up smoking 8 years ago I developed diarrhoea so they I’d one of those a they said I didn’t have coeliac .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
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