Levothyroxine >recommended dose

Hormones
21

Hi

I was very interested to read from your posting that the TSH changed after taking Vit D3.

This explains a lot in what has been happening to me over a number of years but a thyroid disorder was never even suggested until on April 27 2015.an incidental finding of a multinodular goitre showed up on a CTPA scan to exclude another pulmonary embolism .

My TSH was 0.17 Free T4 was `16.5, TPOA were less than 33.

I have twenty nodules on the thyroid.

Still untreated.

never diagnosed until April 2015.

22

Hi Shelly

I wholeheartedly agree with what you have written and reinforce that it is important to stick to the issues raised.

I hope you do not mind my saying so but I have always found your responses very accurate, informative and clearly written.

We are lucky to have your invaluable input on this Forum.

Jean

 

23

Jean,

Thank You very much.  It means a lot to me.

XO Shelly

24

I don't know if this will help any but I used to have a really good doctor and we took my dose (of Levo) from obvious hypo to a "perfect" dose where I felt normal. He said that if we missed the perfect dose and we kept increasing the Levo I would begin to feel hypo again (even though we were moving into hyper territory). He said that this would happen because one's heart begins to work harder beyond the critical dose and you begin to feel tired due to that. He likened it to a car idling too fast, he said that even though the car wasn't running you are wearing out the parts just because idle is too fast.

At 300mcgs I think you might have gone beyond your critical ("Perfect"wink dose.

25

Hi Shelly

You are welcome.

Very welcome indeed.

I was told nothing about the thyroid and if it had not been for yourself  then I would be in the dark. It is one thing researching on the net but it is not the same as actually communicating on a one to one basis with another person especially a very knowledgeable and experienced person such as yourself . It is only when one is in a position to do that that one can feel truly safe,supported and confident.

I have always found that the information that you give is honest, genuine, accurate and completely relevant.

This thyroid business is indeed very frightening, there is no doubt about it.

Please continue to help us.

With kindest regards

Jean xx

26

Will the higher dose affect the heart?

Jean

27

Hello LAH,

 I agree.

Shelly

28

Hi Jean,

Yes if you go too far or hyper for too long. You have to monitor your heartbeat very frequently (t least twice a day) and get back to the doc fast if you go too far into hyper. (Don't make an appointment for 2 months hence. - get back in there fast)

29

Hi LAHs

Thanks for the  info. What are the parameters?

Jean

30

Well, for myself: My basal pulse rate (first thing in the morning) was 60 bpm. When I went down to the supermarket (i.e. active) where I could take my BP, my pulse was about 70 bpm. I actually never saw a dangerously high figure but should my basal rise to 70 bpm and/or my "operating rate" increase to 90 bpm I would have cut back my dose immediately. The first percieved increase would probably have been due to my increased production of T3. The half life of T3 is between 4 and 24 hours depending upon which paper you read, so missing one day or reducing your dose to your previous dose would bring you back into safe range - and tell you that you are close to your critical dose.

So, the paramerters:  I would say that any increase of about 17% should require a cut back. 20% should trigger a fast consultation with your doctor. In either case, drop  back to your previous dose. But keep measureing so that you know exactly what is going on.

31

It is a job to even get an appointment in the UK

32

Hi jean, am I right in thinking you are not taking any replacement thyroid hormones? And that your blood test results (e.g. TSH, T3 and T4) are all present without treatment? If so, it's more likely that you have hyperthyroidism and that the nodules on your thyroid are giving out extra thyroid hormones. I suspect that you are not being treated for it because of your other medical conditions (surgery to remove the nodules may not be an option because of your Long QT diagnosis). Being hyperthyroid would give you symptoms of anxiety (as would the natural response of worrying about all the other medical conditions you have!) It may be worth a trip back to your GP to discuss your options.

33

Shelly my TSH is low, and I am told by the Endocrinologist that the T3 in the NDT is suppressing the TSH. I am also finding it very odd that the Endo states that NDT is not in a correct ratio for the human thyroid and too much T3

34

Some doctors think fibromyalgia is a result of incorrect thyroid hormone levels in one's cells not being correct.

35

LAHs , I read that the human thyroid produces thyroid hormones in the ratio T4:T3 of 13:1 and that pig/cow NDT is at ratio of 9:1, hence to get the ratio correct when prescribing NDT some doctors prescribe T4 with the NDT.

36

Shelly I will have to repeat this as it did not allow me to finish.

My TSH is low and the reason I am told by the Endocrinologist is that the T3 in the NDT is suppressing my TSH, but too much T4 has also done this in the past.She also stated that the NDT which comes from pigs thyroids is not in ratio of what the human thyroid has. NDT has too much T3 to T4. I like others find this very confusing. It is also no good telling patients in the UK to go to their GP or Endocrinologist for help if taking their own NDT or T3 as they do not agree with anything other than T4 and if you are lucky enough you will get prescribed 10mcg T3 twice a day.

37

So LAHs your basal pulse rate is similar to mine: at 60=ok, above 70=over treated with thyroid medication.

38

 Sorry if I misunderstand you but are you saying that even Endos in England refuse to do the T3 and T4 together?

Jean

39

Barbara

The problem lies with being referred to an endocrine surgeon rather than an endocrinologist.

As you already know an endo has diagnosed me with sub clinical hyperthyroidism due to low TSH , normal T3 and T4 and TPOAS being less than 33.

He has highlighted the fact that the multinodular goitre can hyper-secret T3 and T4.

It is mandatory that this is treated urgently.

I saw an endocrine surgeon very recently who did not even bother to take blood for thyroid function and I had a very strong discussion with him about this. He walked out of the room slamming the door.

I await an appointment with an endocrinologist rather than an endocrine surgeon who told me that under the NICE Guidelines that h is not required to treat a sub clinical hyperthyroidism. Pit he didn't do his homeweork properly and then he may have spoyyed that sub clinical hyperthyroidism is a seperate entity and it is mandatory to treat it.

Jean

 

40

Sorry Kathleen, it was late at night and even as I was typing that I wondered if it was the correct thing to suggest. I haven't been in the UK for a long time and I was writing as if to a US following. Maybe if you do not have instant access to medical care you should be doubly vigilant when trying things out.