Fearful of being ill for the rest of my life

[Zazzn]

I had my thyroid removed in January this year. I feel well on 125 per day but my consultant is going to reduce the dose. On a lesser dose I don't feel well. I would like to know how other people manage.

[Anthea55]

The important thing is to take the dose which makes you feel best. Will your GP let you stay on 125?

Often the best dose for you suppresses your TSH and consultants don't like that.

My endo tried to tell me that my suppressed TSH would be bad for my bone density and lead to osteoporosis, but since I'm in my 70s I've insisted that I'd rather have a dose that works and makes me feel better now. Thinking about that - if I feel better then I am more likely to be able to take exercise which is weight bearing and that should be better for my bone density, which rather defeats his argument.

Ask your consultant why he wants you to reduce your dose. Insist that you feel better on the higher dose and want to stay on it. Read as much as you can about thyroid problems so that you have answers for him; the thyroidUK website is an excellent place to start and Dr Peatfield's book is useful too.

[shaws Administrator]

If you've had your thyroid gland removed and he wants to reduce levothyroxine ask him to replace the reduction with T3. I think it's very cruel to expect you to reduce a dose which makes you feel good when it is only the TSH he is concerned with and no, you wont have a heart attack if your TSH is suppressed or low.

You have to stick up and either refuse because you are feeling a bit better on the dose you are taking or if he reduces your levo only due to the whereabouts of your TSH - he knows very little about how we feel when we don't have sufficient.

Levothyroxine is supposed to convert to T3, the active hormone, T4 (levo) is the inactive hormone. We have to have sufficient T3 to saturate our Receptor Cells and if we don't we suffer.

I wonder if your Endo is aware of this 'phenomenon.'?

hormonerestoration.com/Thyr...

We have to be demanding at times as many say we have a somatization disorder if we say we are still unwell when they only take notice of the whereabouts of the TSH.

We have a lot of learning to do if we want to recover our health.

I hope you feel better soon and follow your instinct - after all it's hormones we need to feel better.

[Zazzn]

Thanks for your help. I need to learn more about it. I wonder if I can discharge myself from the hospital and just rely on my go who recognises that people are all different, with different needs. I feel much more confident now that I am in touch with you all. Thanks again, I will keep in touch.

[Chippysue]

This is why there are so many people still suffering with symptoms because doctors are obsessed with the tsh!

I have had s suppressed tsh since feeling better, about 5 years. My free t4 is above the top of the range and my Endo is happy as long as my free t3 is in range which it is.

I take a mixture of purified Levo and naturethroid. I have to buy my own NDT but my endo monitors me to keep GP's away from me. I also have a bone density scan every 3 years.

I would never lower my dose for anyone as I just cannot function with less medication.

It is more harmful to be under medicated.

Knowledge is power, we know far more than doctors about thyroid disease.

Sue

thyroiduk.org

[Zazzn in reply to Chippysue]

Thanks Size, I am going to look up Thyroid uk.

[helvella Administrator in reply to Zazzn]

This very forum is the support forum for Thyroid UK. The forum exists because of Thyroid UK. That is why it says "Thyroid UK" just below the green band at the top of the screen.

[Pepekins in reply to Chippysue]

That is interesting as my endo also want s to reduce my dosage. I had my Thyroid removed 14 years ago due to papilliary cancer, found quite accidentally. I was on 150mcg initially, but sadly that really was too much and I did lose a fair amount of bone in my hips which resulted in a hip replacement. My dosage has gradually been reduced to 100 for 5 days and 125 for 2 days. I think there is a belief that highish dosage is deemed not good for heart and bones now. My endo would like to reduce further, however I feel so tired on a lower dose and gain weight and to add insult to injury my hair suffers. I too am interested in supplementing perhaps the 125 days with NDT to get T1 & T2, so a combination of both Levothyroxine and NDT. I am a bit scared to take this step on my own and would be grateful to hear how pothers have made the transition to using a combination of thyroid medication. Best wishes.

[Zazzn in reply to Pepekins]

Thanks for sharing this. Yes, after reading this I begin to understand why the consultants are so insistent on reducing the dose.My consultant is doing it gradually. I am now on 100 Saturday and Sunday and 125 Monday to Friday.

This is the first week. I was having 125 a day after my go upper the dose. I will keep you posted.

[Glynisrose]

Why do you allow your doctor to reduce your meds? YOU are the one who manages your u a t not a doctor so refuse to lower your meds!

[Zazzn]

I am new to believing that I can refuse. Can the doctor refuse to prescribe what I need?

[galathea in reply to Zazzn]

Well, yes he can. You need to say to your doctor that you are hesitant to reduce your meds because you cannot understand the rationalle behind it. Ask him exactly why he thinks you should reduce. If he says the tsh is too low ask for details of what he thinks this will do to you. ( he will say heart and ostoporosis and there are papers available which say this is not so). If he does come up with osteoporosis you can ask him for a bone density scan.... Although if you have graves, you are more likely to gave lower density. Say that if the scan shows cause for concern you will consider reducing dosage.

Faced with any sort of reasoning or logic, most gp's just back off and leave you alone.

Be calm, look him in the eye and basically ask him to explain himself.

Xx G.

[Zazzn in reply to galathea]

Thank you.

[Eddie83]

There are articles all over the web documenting why TSH+T4 is not optimal treatment - STTM, Mary Shomon, Kent Holtorf, etc. I suggest you learn as much as you can about this and be prepared to tell the consultant that how you feel is way more important than the lab test. If he won't cooperate, self-treatment with additional hormone from off the web, is the answer.

[dolphin5]

Hi Zazzn. I had my thyroid gland removed, and afterwards worked up to 125mcg per day. Like you, I feel ill and develop hypothyroid symptoms of I take any less. My doctors (and I've gone through this battle with several of them) insist that I should because of a suppressed TSH. However, my reading has convinced me that the risks they think we are facing with suppressed TSH are rubbish, (as long as the dose works for us and we are not hyperthyroid), and a suppressed TSH is inevitable if we are adequately treated with T4. I think that it is important to learn as much as you can about the workings of the thyroid gland, and treatment for the lack of a thyroid gland, in order to make sure that you make decisions you are comfortable with.

In fact, it seems to me that doctors remove our thyroid glands, and then treat us as if we still have one. This is fundamentally wrong, because we are lacking the production of other thyroid hormones (T1, T2, T3, and I believe there is a T0, as well as T4). Furthermore, a normal thyroid gland contains little glands that produce calcitonin as well. So T4 alone is far from ideal, but it is not surprising if you need a TSH-suppressing dose in order to be ale to convert enough of the other thyroid hormones.

After about 16 years of T4 only treatment, and the last two years being hassled aggressively about my dose, I have finally bought T3 on the internet. I now feel better than I have since loosing my thyroid gland. It's far from ideal, though, and if you feel well on 125mcg, I would strongly urge you to flatly refuse to drop it. You can always try dropping it yourself if at any time you feel over-medicated, but if you allow them to drop it, you may never get it put up again.

Good luck, anyway. X

[LAHs in reply to dolphin5]

Dolphin you are dead right on all points. My first experience with Levo was with (miraculously) a cooperative GP, he let me increase my Levo dose until I felt well. At this point I had max T4 (of course I did) and a T3 level at 130 ng/dL, this was the T3 level I felt good at. After he retired, all subsequent fiddling around with my dose caused my T3 to go down together with my feeling of being well.

And yes, yes "suppressed TSH is inevitable if we are adequately treated with T4."

Another doctor told me that the whole hypothalamus, pituitary, thyroid protocol breaks down if you remove the thyroid from the equation. The supreme output from this feedback loop is the stupid bloody TSH - and it is upon this, thyroid or not, that docs base there dosage. This is SO obvious, it's not rocket science - nor even brain surgery.

[galathea in reply to LAHs]

Well, we do rocket science on here... I actually know someone who is a rocket scientist...... Anyone know any brain surgeons? This apparantly is not just a thyroid forum. :-). Xx