Long standing mystery of 7 years

[maplewood]

Need help to sort this mystery it has gone on too long. As recently posted my TSH was 4.5 and T4 was 9.5 on my bloods last week. The problem I have is that the GP will more than likely say increase meds. I do not think I can do this and this is why. For the last month I have been suffering with perfuse sweating during the day and night and they are draining. This last week I have not been able to sleep (wide awake and full of energy at 2am) and prior to that I was doing great with sleep. Then a couple of nights ago I woke short of breath. I spent six years of hell previously and I do not wish to go there again. I used to be roasting hot all the time with awful sweats. Then used to get heart palpitations that would wake me after a couple of hours in bed along with the shortness of breath. I felt so ill it was as though I was hyper when my bloods said ok. I had a year off levothyroxine as my GP said it was worth try as it may have been a one off (did not have any of these symptoms then). I held my own for maybe six months then my TSH started rising and was eventually told I needed to start levothyroxine again. Interestingly after one week of taking it I got shooting pains all over like someone was stabbing me all over even in my eyes and down below. I was taken off as I was told I had also complained about the same thing in 2013 my first lot of levothyroxine. As my TSH continued to rise I was put on liquid and very carefully started to increase dose to my current 75mg. I have never had antibodies (upto now) and was always told there was something wrong with my pituitary gland. My last scan maybe a year ago showed a small thyroid no nodules or anything. So why is it as I increase my levothyroxine to get my TSH in order I feel worse than ever? Also if the T4 is the levothyroxine I am taking shouldn't my T4 be higher than that if I am taking 75mg? I am struggling to understand how to help myself. My other health issue is severe spondylosis in neck, slipped discs and nerve entrapment. Could I maybe not need the levothyroxine could this be something to do with my neck? or do i have graves or something else. Why is it the higher the dose of levothyroxine I feel worse. I will never get my TSH where it needs to be at this rate as i cant stand the sweats. Many thanks for any advice in advance xx

[shaws Administrator]

To know whether or not it is your thyroid hormones that are causing bad symptoms, try taking one anti-histamine tablet one hour before your next dose and if you don't have a reaction, then switch to another make as you might have a sensitivity to something in the tablet.

[maplewood in reply to shaws]

I am not sure what would be left for me to try to be honest as tried a lot of the tablets and now on liquid. I oftain wondered about been allergic to the meds as again recently I had some huge hives. I have never considered sweating, shortness of breath and heart palpitations though as allergy but i think you could be right. Thank you

[maplewood in reply to maplewood]

not sure about the not sleeping though

[SlowDragon Administrator]

Night sweats frequently low B12

Breathlessness low iron/ ferritin

Joint pain low vitamin D

What vitamin supplements are you currently taking

When were vitamin levels last tested

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 autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Presumably you have Ord’s thyroiditis (hashimoto’s)

Ask GP to test vitamin levels

It can be extremely difficult to increase dose levothyroxine when been under medicated for long time

May need to increase extremely slowly

Important to have OPTIMAL VITAMIN LEVELS too

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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

[Jazzw]

Undermedication symptoms can be identical to overmedication symptoms. And when you’ve been undermedicated for a while, you’ll likely have major vitamin and mineral deficiencies which make it difficult for your body to process levothyroxine (that is, convert T4 to T3). So taking levothyroxine then seems to have additional side effects. Bit of a catch 22—you can’t get better with thyroxine and can’t get better without it.

What are your Vit B12, folate, Vit D, ferritin levels like?

[maplewood in reply to Jazzw]

They were all low and i am currently trying to build them back up on supplements. Thanks

[DippyDame]

It would offer a clearer picture if FT3 was tested with TSH and FT4With those labs we can judge our conversion rate

Doctors focus on TSH when they should be monitoring both frees, despite that your TSH at 4.5 is too high which indicates your thyroid hormone level is too low.

For good health it should be close to 1....or under.

TSH is a pituitary hormone not a thyroid hormone, it responds to the body's thyroid hormone level and signals to the thyroid to produce more or less hormone as required.

High TSH = low hormone ; low TSH = high hormone

It looks as if your essential nutrients are low....vit B12, vitD, folate and ferritin

You need to get those raised to optimal, this will support thyroid function

If levels have been low for some time it may take longer to raise them.

Palpitations can be a sign of under as well, as over medication

It appears that you are still undermedicated, 75mcg is not a large dose

How long did you stick with the increase before you dropped back the dose because of the sweating,,,,it takes 6 to 8 weeks for the body to adjust to a new dose?

Are you taking levo as advised, away from food etc? Might it be that you are not absorbing the T4 from your gut to your serum, the T4 should then be converted to T3 in various parts of the body eg the liver before it is "grabbed" by T3 receptors and enters the trillions of cells/ tissues where where it does its work.

Very basic explanation but if anything fails at any stage in the journey problems can arise

Have you been tested for diabetes.....sweating can be a symptom?

I had a lot of neck problems /whiplash after a car crash but, in my case, sweating was never a symptom. Adequate thyroid hormones seemed to lower any long term pain

Suggest you correct nutrient deficiencies then try an increase again.

Best...

DD

[JAmanda]

I agree it's more probable the symptoms are you being under medicated not over - I felt better when I took 20 mcg T3 in one go than when I took 2.5 x4 across the day. I think my symptoms were my body asking for more. But you do often read on here cases exactly like yours and I don't know how they resolve. Get a top of the range vitamins and thyroid check done privately then go all in trying to get your vitamins up then increase your tsh. There is a measure many - and NICE - suggests that you need Levo at 1.6 x your weight in kilos so that might be something to bear in mind/aim for.

[humanbean]

Have you ever had your cortisol levels measured with a saliva cortisol test?

When thyroid hormone levels are inadequate the body will try and compensate with extra cortisol (and possibly adrenaline). When someone with poor thyroid function is treated with thyroid hormones like Levo their cortisol and adrenaline levels should reduce by themselves.

But if cortisol levels are high for a long time they can get "stuck" and stay high even when thyroid hormones are taken. High cortisol plus prescribed thyroid hormones can give someone hyperthyroid symptoms even though they aren't actually hyperthyroid or over-medicated.

Another issue can be that the body might not be able to keep up cortisol production at high levels and levels start to drop. Low cortisol can have lots of symptoms, many of them overlapping with hypothyroidism symptoms. Low cortisol can also affect tolerance of thyroid hormones, and the result is often that the patient develops symptoms of apparent over-medication.

The best two tests for saliva cortisol are the following :

thyroiduk.org/getting-a-dia...

regeneruslabs.com/products/...

.

thyroiduk.org/getting-a-dia...

gdx.net/uk/product/adrenal-...

.

Note that Genova doesn't like contact with the public directly, so dealing with them is more difficult than dealing with Regenerus. (So I'd go with Regenerus.)

[Batty1]

Maybe the sweating is related to menopause?

[maplewood in reply to Batty1]

Nope I haven't had a visit for nearly two years and the flushes I had were different to now. x