Tsh

[Tatty10]

Can anyone explain why tsh levels fluctuate when you do not have a thyroid, and why is tsh level believed by many medical professionals to be the most important factor when diagnosing thyroid illness, and disregard how you are actually feeling

[rosetrees]

TSH levels fluctuate all the time. TSH is produced by the pituitary, which doesn't know you don't have a thyroid. It gets its messages from the hypothalamus which, in turn, monitors the levels of T3 and T4 in your blood. If the levels fall below where your hypothalamus thinks they should be, it tells the pituitary to produce TSH. The level is changing constantly in an attempt to keep your blood levels stable.

If anyone knew why thyroid (and adrenal) problems seem to be the only illness in medicine whose symptoms are totally disregarded, they might win a medal. It has to be something to do with the drug companies. Curiously, they recognise several categories of hypothyroidism, which include sub-clinical hypothyroidism and overt hypothyroidism. Sub-clinical actually means that the patient shows abnormal test results but has no symptoms. Most people have symptoms yet are still, wrongly, told their illness is sub-clinical and they won't be treated. One might wonder why the **** people go to the doctor?

[Tatty10 in reply to rosetrees]

Thanks rosetrees, i just find this whole thyroid problem so complicated and it distresses me when the medical profession will not listen to my symptoms and keep telling me that i am adequately compensated with levo and will only give me treatment on tsh result only.

[rosetrees in reply to Tatty10]

Do you have your latest thyroid test results? If not, ask for them. From now on always ask for print-outs of all test results, with ranges. You are entitled to them and they can't refuse.

You need to make sure they have tested TSH, FT4, FT3 (they will try to refuse to do this one, so insist), thyroid antibodies, iron, folate, ferritin, Vit D, Vit B12. Go back and ask for any that haven't been tested.

You aren't interested in your doctor's idea of "normal", which is why it is essential to get the results. All those vitamins and minerals need to be well in range, not just bottom, for your thyroid meds to work effectively. For some this can make a big difference to how they feel.

FT3 needs to be measured as T3 is the active hormone that the body uses. Some people don't convert effectively from T4 to T3. The only way to find out is to test both FT4 and FT3. If it is found that you have thyroid antibodies, going gluten free might make a big difference for you.

Once you are on thyroxine, your doctor should be aiming for your TSH to be around 1. Most seem ignorant of this and will leave you with a far too high TSH and far too low FT4 and FT3. Another reason why it is essential to ask for test results.

When you have your results, come back and post them here. There is also a chance that knowing that you will see the results will have a magic effect on your doctor's thinking and they will raise your thyroxine. It's odd how their attitude changes when they know you will see the results. I know that from experience.

[greygoose in reply to rosetrees]

When they know that you take enough interest in your disease to learn about it and are informed enough to ask to see the results! The look of shock on their faces sometimes when you insist that you won't accept 'fine' as a diagnosis and want to see the figures. lol

[Tatty10]

Hi here are my latest test results still feeling very tired and lethargic and getting out of breath doing simple things also started getting palpitations

Tsh 0.65 (0.35-5.5)

T4 17. (9-23)

Plasma parathyroid 4.3 (1.1-6.4)

Blood tests

Mch

26.4. (27-32). Low

Mcv 105 (80-100) high

Mchc 300. (320-360). Low

Rwd. 16. (11.0-14.8). High

Taking 125 micr levo 500mg calcium had a tt 14 months ago with damage to parathyroids

Have been told thyroid adequately replaced and blood tests nothing to worry about

dont know what these results mean and why do i still feel unwell any ideas welcome. felt much better taking alternate 150/125 levo but started having palpitations so dose reduced to 125 daily hypo symptoms returned and still having palpitations any advice please

[greygoose in reply to Tatty10]

Have a look at this, Tatty, it talks about fluctuating TSH levels :

tiredthyroid.com/tsh.html

If I were you, I would think twice about the calcium suppliments :

wakeup-world.com/2013/10/21...

Are you getting enough salt? Most people aren't. And if you take calcium suppléments, are you taking magnesium to balance it? Because if you're taking calcium, your magnesium will be low.

You cannot possibly tell if you are adequately replaced without seeing your FT3 level. Doctors are too stupid to understand this!

Hugs, Grey

[Hidden]

Your doctor doesn't seem to have noticed your MCV results are out of range. It means your blood cells are large and can be indicative of Vit B12 deficiency. Have you ever been tested for B12 deficiency or pernicious anaemia?

Low B12 symptoms are very similar to hypothyroid symptoms. b12deficiency.info/

[PinkNinja in reply to Hidden]

Totally agree.

As well as high MCV, the MCH and MCHC are low which suggests these abnormally large red blood cells also don't have enough iron in them to function correctly. So this doctor had not only failed to notice a potential b12 deficiency but also possible iron deficiency anaemia!

Carolyn x

[Tatty10]

Hi lilymay when i asked about the results he said it was nothing to worry about maybe i should go back and tell him i am worried i feel scared since having my thyroid problems i have not the emotional or physical strength to stand up for myself and feel like going into a corner to hide away

[rosetrees in reply to Tatty10]

By "nothing to worry about", I think he means "I don't understand them". There's little point in doing tests if they refuse to act on out of range results. Following what Lily and caroline said above, I'd go back and ask for your vit B12, iron, ferritin, folate and Vit D to be measured.

[galathea]

Well why not just buy some sub lingual b12 and see if it helps you feel any better... Don't involve the doctor at all... He doesn't sound particularly clued up.....

Xx

G

[Tatty10]

Any ideas where to buy it from and what amount i should take

[PinkNinja in reply to Tatty10]

Jarrow b12 is good. It is a good idea to take a b complex too as the b vitamins work together. Jarrow do a good one of those too.

You may also need to take iron as your MCH and MCHC are low indicating possible iron deficiency anaemia. You should get iron and ferritin levels checked by your GP before taking iron to be on the safe side. He should have done those anyway with your symptoms and red blood cell results! If iron is low, you will likely feel very little benefit from your thyroid medication until this is sorted out.

I hope that helps.

Carolyn x

[Tatty10]

Gp said blood results were nothing to worry about will try b12 and b complex thanks for the advice x

[galathea]

Amazon sell b 12.

Xx. G.

amazon.co.uk/Jarrow-Methylc...

[greygoose in reply to galathea]

Or go here :

biovea.net/FR/index.aspx?TI...

I like their stuff!

[Tatty10]

thank you for all your help and support will let you know how i get on, without this forum i would be totally lost x