Would like to self medicate, but need some guidance

I have been hypothyroid for 20+ years and have seen multiple doctors...family dr, endocrinologist, internal meds, etc. I recently switched to a NP who specializes in thyroid issues.

Throughout the years, I tried different brands of synthetic medication before switching to 120mg of Armour, which seemed to be the answer. That is until I started experiencing the all too familiar symptoms..fatigue, depression, achy joints, hair loss, puffy face/hands/feet, and the dreaded weight gain. I then started taking a combination of Natural Thyroid and T3. However, my symptoms just kept getting worse. I gained almost 30 pounds in 6 months. My NP decided to take me off my meds for a month so she could start from scratch, so to speak.

At my last appointment, she suggested I seek out the help of a specialist and put me back on 120 mg of Armour in the meantime. I am having trouble finding yet another thyroid doctor in my area (Green Bay, WI), hence the reason for self medicating.

Here are the results from my last 2 blood draws..

8/4/15

TSH 0.031 (0.450-4.500)

FT4 0.77 (0.82-1.77)

FT3 6.2 (2.0-4.4)

Cortisol 8.6 (2.3-11.9) PM specimen

*I was taking 120 mg Thyroid/7mcg Liothyronine

9/4/15

TSH 11.230 (0.450-4.500)

FT4 0.15 (0.82-1.77)

FT3 0.6 (2.0-4.4)

Cortisol 14.4 (6.2-19.4) AM specimen

*without medication for a month

Any suggestions would be greatly appreciated!!

[Clutter]

Welcome to the forum, mljohnson1365.

I really don't get why any doctor finds it necessary to stop a thyroid patient's meds completely to 'see where we're at'. Why not just reduce dose if they need to see FT4 and FT3 nosedive and TSH shoot for the moon?

You were overmedicated on 120mg + 7mcg T3 to have FT3 so much over range, and paradoxically, overmedication can cause weight gain and some of the symptoms which you assume to be hypothyroid.

thyroid.about.com/od/thyroi...

It's going to take a few weeks to rebuild FT3 but I think you should have a follow up test in 8 weeks. If FT3 is over range you should stop the T3 and possibly reduce to 90-105mg.

Hypothyroid patients are often low/deficient in ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. It's worth getting labs and supplementing to optimise levels if they're suboptimal.

Gena Lee Nolin has produced a list of thyroid friendly doctors in this link officialgenaleenolin.com/pr...

[helvella in reply to Clutter]

No doctor who undersood thyroid would ever make such a severe, sudden and complete reduction in treatment. Going without for a day, or two, is fine. Slightly longer is arguable. But four weeks is flat out dangerous. Does the NP even know how to spell "myxoedema coma"?

[Clutter in reply to helvella]

Helvella, ThyCa patients are off thyroxine 4 weeks and 2 weeks off T3, sometimes longer, prior to RAI. I think there's little likelihood of myxoedema coma 4 weeks off meds but it's damned unpleasant for the patient and given it's likely to take another 4-8 weeks recovery it should never be used as 'a start from fresh' method. The NP didn't appear to notice that mljohnson was overmedicated previously when the same dose was reinstated

[helvella in reply to Clutter]

At least in the ThyCa situation it is expected that the patient will be under some degree of observation. It is recognised that it is a desperately undesirable thing and is justified on the same basis as the brutality of surgery - the ends (hopefully) justify the means.

It is, as you say, nonsensical to put it forward as a start-from-scratch. The only way of doing that would be winding back time to a point before the thryoid issues arose.

Yes - NP does not appear to have understood much at all.

[Clutter in reply to helvella]

Helvella, observation being a blood test a week prior to RAI to see whether TSH will be high enough to stimulate uptake.

[wiserlady6 in reply to Clutter]

This is funny! My doctor told me that as I am borderline it is not necessary for me to take thyroid meds. I insisted on it because I felt crap. After a while it was a 50 mg dose every day. Then when I decided not to take it for a few days to see if I felt better he went beserk saying I would die. He cannot have it both ways. If you need a high dose of course it will affect you if you stop for a few days but if you only need a very low dose this makes no sense.

My nurse came to see me and gave me blood tests and told me I had a iv disease which had given me kidney disease. She scared the life out of me.

According to her my kidneys were in an awful state and would never be ok again. When I spoke to another nurse she said oh no there is no kidney disease. Remember we are all human. Nurses and doctor also have ego and make mistakes and it is not them that lives with the mistakes they make with us. IF I take somethign that makes me feel awful I stop. I dont ask for permission.

[Clutter in reply to wiserlady6]

Wiserlady, your doctor was alarmist. Of course you won't die if you stop taking thyroid hormone for a few days. It is likely to make symptoms return and for you to feel unwell after a few days though.

[wiserlady6 in reply to Clutter]

This is what I said. As I only need 50 mg a day if I do not take it for a while I end ujp with a blocked ear. Originally I told the doctor I had underactive thyroid and he would not listen. I insisted on it because I kept getting blocked ears, infected ears that hurt and heachaches and blocked horrible noses. I said it was more than coincidence that every time it cleared it it returned soon after.

I find if I come of the thyroxine I get withdrawals for a few days where I can feel quite bad, then I feel fine till the blocked ear returns.

But now I also have a lot of pain in my b ack and leg because I recently bent forward to pick something up and got awful shooting pains and trouble moving ever since. I now realise I have a cyst middle lower back and this is the problem, it appeared then. Am thinking of getting a tens machine as cannot take pain killers.

[Clutter in reply to wiserlady6]

Wiselady, why do you stop and start Levothyroxine? It's not good to be slowing and speeding metabolism. Levothyroxine should be taken every day to keep it stable.

[wiserlady6 in reply to Clutter]

Beca\use it gives me terribel side effects and they do not go if I decrease or increase the dose.

[Clutter in reply to wiserlady6]

Wiserlady, ask your pharmacist to dispense an alternative brand. There are 3 generic makes available in the UK, Mercury Pharma, Actavis and Wockhardt (25mcg) only and you may do better on an alternative.

[wiserlady6 in reply to Clutter]

hi there, I did tehink of that and tried all three. I now take the fakes from the doctor every other day and a true thyroid tablet every other day so that the side effects are not so bad.

[Clutter in reply to wiserlady6]

Wiserlady, if you mean you are taking natural dessicated thyroid (NDT), alternate day dosing means you lose the daily benefit of the T3 in NDT. It would be better to take a half dose daily plus Levothyroxine, or switch to NDT only if Levothyroxine is still giving you adverse effects.

[wiserlady6 in reply to Clutter]

Thank you. Will have a think about that and make a decision on it soon. I feel quite well donig it this way but you have a point.

[Clutter in reply to wiserlady6]

Wiserlady, a better point is to ignore advice to change your regime when it's working for you and you feel well

[wiserlady6 in reply to Clutter]

Hi CLUTTER. Yes this is what I do. I do it for everything. I used to get people giving me advice on how to run my business, how to find new staff, how to improve profits, all people who had no experience or skills at running a business. I have had advice on health from people who did not know what a thyroid is, or forget that I am borderline and the doctor told me I do not need any medicine at all, but I had insisted, so I am polite and smile and then go and do what is best for me.

[Hidden in reply to Clutter]

Thanks for the response Clutter!! I will definitely check out the links!!

[HIFL]

Based on your August results, I would think you're overmedicated on NDT + T3. Have you considered NDT + T4? Your T4 is below the reference range on 2 grains, which suggests this might combo might fit you better. It's trial and error to figure out what combo of T4 + NDT will work, but here's a formula to find a starting dose. The formula is too low for most people, but you have to start somewhere. tiredthyroid.com/blog/2014/...

[Hidden in reply to HIFL]

Thanks for your response. I will check into the NDT + T4, since I have yet to try that combination.

[shaws]

This is a link which may be helpful.

web.archive.org/web/2010103...

[Hidden in reply to shaws]

Thank you...I will check it out!!

[wiserlady6]

It is easier to self medicate than doctors and nurses say, you just need common sense. I would be waiting six weeks to ask the doctor and think why should I wait six weeks? So I would increase a little and see if it improves rather than wait that long.

I also got the natural thyroid tablets and switch them about so that the side effects are not so bad. N

[wiserlady6]

A lot of people look up to doctors and nurses as though they are Gods sitting on golden thrones. The wisest pepole who never make mistakes. It is very naive and immature of them. We need teo take responsibility for our own well being and think for ourselves.

[wiserlady6]

Well done. Am very proud of you. Wish more people used some brains and initiative. Most go running to the doctor as though the doctor is their mummy or daddy and totally trust them with their life, fools.

[Hidden]

Thanks for your response.

[Hidden]

Thanks for your response! Sounds like I have a lot of research to do! I will check out the links!