Anyone with Hashimotos feel slightly worse initially taking NDT

[elaine2447]

Sounds silly I know, I found a Functional Medicine Practitioner who is also a GP and she is trying me out with just a quarter grain of NDT for two weeks as I don't react too well to medication. My antibodies are over 1300 and I have been gluten free since last November and cut out dairy the last month or so. I have put all my hopes into this GP and NDT as I have felt so unwell but have other ailments like hyperparathyroidism and severe osteoporosis and I do tend to get a bit panicky particularly with backache as I recently found out I have a thoracic compression fracture. So today is fourth day, took my quarter grain this morning and a couple of hours or so later, felt really very odd and sweaty. I felt okay yesterday more like my old self but I did take a small antidepressant Saturday night to help me sleep. I gave up taking them several months ago as I believe they were masking the thyroid problem. I thought I read somewhere that one can feel worse initially on NDT but maybe I misunderstood and I can't find it now.

[Clutter]

Elaine2447,

Can you post your recent thyroid results and ranges? 1/4 grain is such a very small dose it seems inconceivable that it will be sufficient to relieve symptoms. How much Levothyroxine were you taking before you switched?

[elaine2447 in reply to Clutter]

Hi Clutter,

Thanks for your response. I haven't had any recent ones done, Functional lady was going by these from four months ago and a couple done in my hospital last month but that was for parathyroid and bone cancer. healthunlocked.com/thyroidu...

I have had to stop taking this dose, small as it is, felt so ill with racing heart, sweating, nausea and no sleep. I think it has interfered with my adrenals and now looking back to that dreadful three months towards the end of 2015 I had with no proper assessment even though I had top endocrinologist from Imperial college plus useless GP's, I think my nightmare was adrenal related then. I say this because in desperation I took a handful of Xanax, after 13 weeks of no sleep, barely able to eat and function which then led to "oh yes depression and anxiety", but I was never depressed. So they put me on mirtazapine which I hated as it was an antidepressant but I did lose those awful symptoms and gradually weaned myself off the mirtazapine after several months. However, since this episode, the worst was this morning with profuse sweating and such ringing in my ears I went to shut the window thinking it was coming from outside, lol, I have read up that mirtazapine was used in a study to reduce cortisol levels by around 30%. I have sent off today for the finger prick test for cortisol although I understand the saliva test is preferable and will see if it shows anything. I am feeling pretty bitter about it all as I am never one for going to the doctors but I was just treated as a bit of a nuisance. The sad thing is in my Xanax stupor,I slipped on the last stair and hurt my back, and only at the beginning of last month they decided to x-ray my back and found a compression fracture T5 and the pain made worse with a frozen shoulder exercise! I have severe osteoporosis on top of everything else, going for the hat trick!! Good old NHS, mind you the private sector has been as bad as I have spent over £6000 in the last couple of years but savings gone now.

[elaine2447 in reply to Clutter]

Sorry I didn't answer your question, no Levothyroxine or anything just occasionally pop a valium now and again when back pain is really bad or I am having a panicky session or agitated (the latter seems to be my permanent state and the poor cats do get sworn at quite a bit lately!!).

[Clutter in reply to elaine2447]

Elaine2447,

If you have adrenal issues you may need to address them before taking thyroid replacement. I would also retest thyroid before resuming replacement.

[elaine2447 in reply to Clutter]

Yes thanks, it's finding someone that is the problem who is in the know and most GP's are not. I've got my cortisol kit which I'll do on Monday morning but I realise now I should have gone for the saliva test but I saw it was £160 and now I have found out that I could get it through Thyroid UK for much much less. I guess that will be next. My surgery just rang surprise surprise about having a calcium blood test and the GP had marked for the hospital lab that if it was over, then to do a pth test. I tried to explain to the girl that doesn't work as just prior to Christmas my calcium was top end normal (which is not normal) but the PTH was 9.96 which is very high, so if I hadn't insisted on them doing a PTH, hospital would not have done this. Also they don't seem to know that vit D should always be done with calcium and pth. It's a battle that I feel I am not likely to win. Just hoping that our hospital do the walk in phlebotomy service even though it means train and bus as at least it will be done properly. Thanks for your input and I hope you have a pleasant weekend.

[Clutter in reply to elaine2447]

Elaine2447,

PTH is a time sensitive test so needs to be with the lab within 2 hours of blood draw. Make sure the phlebotomist is aware that the lab might need to test PTH.

I don't think vitD needs to be tested along with calcium and PTH. High-normal calcium and high PTH indicates primary hyperparathyroidism but low and normal calcium with high PTH indicates secondary hyperthyroidism usually due to kidney disease. You might want to go to hyperparathyroid.org.uk/ for advice.

[elaine2447]

Thanks, I know the score, have wasted £6,500 on useless endocrinologist, then an endocrine surgeon who got me taking 50,000 IU of Vitamin D per week for 12 weeks (to stir up the calcium and pth as he put it), it hardly made any difference but although my vitamin D was not deplete (94, it then went up to 158). Needless to say, I just got up to 35,000 per week and not in one hit but gradually.

I've have two ultrasounds, one said possible adenoma on right lobe, sestamibi showed nothing, which invariably they don't, then five months later another ultrasound in London with this surgeons "expert" sonographer who said he didn't think so but could see inflammation and possible Graves, CT scan next didn't show anything. He recommended that I have an antibodies test, that was March of last year. The endo surgeon when I said about that, said oh lets just concentrate on the vitamin D!!!!! So I had the antibodies test four months later in July and showed hundreds of them. That's how its gone on, Spire charge £105 just for a vitamin D test whereas I have got finger price tests from Birmingham NHS Assay for £28.

I am thoroughly fed up, got severe osteoporosis, felt so ill towards the end of 2015 (which I am now thinking was due to producing too much cortisol) took some Xanax and slipped on the last step of the stairs and "hurt" my back. Hospital ignored despite covered in bruises, constant back pain and now all these months and months later rheumatologist decided to get back x-rayed as my back was so much worse but not helped with exercise for frozen shoulder, and last month they told me I had a compression fracture at T5.

Nobody in this country seems to know much about hyperparathyroidism. Have had two friends in desperation go to Florida to the famous Parathyroid clinic. It is even more expensive to go there now because of the fall of the £ against the dollar, around £12,000 including flight and accommodation which I guess is still cheaper than the bumbling endo surgeon who was charging £15,000 but in fairness he said he didn't want to open my neck up and find nothing there. So its the waiting game. All the time the pth is leaching more calcium out of my poor old osteoporotic bones!

[elaine2447]

Meant to say, with secondary, vitamin D is nearly always low so I know I haven't got that.