2ND LAB REPORT AFTER 5 MONTHS GLUTEN FREE, SO D... - Thyroid UK

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2ND LAB REPORT AFTER 5 MONTHS GLUTEN FREE, SO DISAPPOINTED

elaine2447 profile image
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I don't understand although I know I feel worse than usual, peroxidase antibodies increased since December but thyroglobulin antibodies slightly down. At least my ferritin is up a tiny bit as is folate but I just don't get why results are worse. Maybe I should stop the selenium. Not sure what > means by folate:

Thyroid Function

THYROID STIMULATING HORMONE *4.97 mIU/L 0.27 - 4.20

FREE THYROXINE 14.95 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 82.5 nmol/L 59.00 - 154.00

FREE T3 4.19 pmol/L 3.10 - 6.80

Thyroid Antibodies

THYROGLOBULIN ANTIBODY 81.530 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES *349 IU/mL 0.00 - 34.00

HAEMATOLOGY Vitamins

VITAMIN B12 608 pmol/L 140.00 - 724.00

FOLATE (SERUM) >19.98 ug/L 2.91 - 50.00

BIOCHEMISTRY Inflammation Marker

CRP - HIGH SENSITIVITY 0.9 mg/l 0.00 - 5.00

Iron Status

FERRITIN 37.48 ug/L 13.00 - 150.00

Compared with December 2016

Thyroid Function

THYROID STIMULATING

HORMONE *4.62 mIU/L 0.270 - 4.200

FREE THYROXINE 14.27 pmol/L 12.000 - 22.000

TOTAL THYROXINE(T4) 81.2 nmol/L 59.000 - 154.000

FREE T3 4.42 pmol/L 3.100 - 6.800

Thyroid Antibodies

THYROGLOBULIN ANTIBODY 114.900 IU/mL 0.000 - 115.000

THYROID PEROXIDASE

ANTIBODIES *310.6 IU/mL 0.000 - 34.000

HAEMATOLOGY

Vitamins

VITAMIN B12 663 pg/ml 191.000 - 663.000

FOLATE (SERUM) 8.61 ug/L 3.890 - 26.800

BIOCHEMISTRY

Inflammation Marker

CRP - HIGH SENSITIVITY 1.7 mg/L 0.000 - 5.000

Iron Status

FERRITIN 29.48 ug/L 13.000 - 150.000

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elaine2447
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Clutter profile image
Clutter

Elaine2447,

You are under medicated to have TSH 4.62. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies may have increased due to the TSH stimulating your thyroid gland.

> by a result or range usually means greater than.

B12 is good and folate is adequate.

Ferritin is still low. Are you supplementing iron?

elaine2447 profile image
elaine2447 in reply to Clutter

Hi Clutter

Many thanks for replying. I was so fed up last night with the results and this awful pain in my ribs that I switched the pc off early last night. Yes certainly undermedicated but alas not medicated at all. I did see a functional medicine practitioner GP in March and tried 1/4 NDT but made me feel really ill which I put down to an adrenal problem. She has vanished and not even bothered to check how I have been getting on. So I feel abandoned yet again by the private sector as well as the NHS.

Sadly my problem is typical as with many that the GP surgery do not care at all and as long as "everything is within the normal range" we can rot. It would be pointless me going to my GP even if I could get an appointment.

Two weeks ago I struggled to get a form from them so that I could go direct to the local hospital's walk in phlebotomy service and get a calcium and pth test (the latter is always a problem because they don't like doing it because of it going off in the collection van).

Anyway, apart from the pth and calcium, although I didn't actually see it on the form, they had done TSH test which has a range of 0.35 - 5.5. It was done around 11.15 in the morning after I had eaten breakfast as I didn't fast because I didn't know they were doing it. So if I go to her and say I did a finger prick test last week and my TSH was 4.92, she will look at their records and say well the week before your TSH was 2.66. Everything is within the normal range!!.

I am very disappointed as I have been taking selenium and many expensive supplements and been very careful about GF and cut out dairy for the last six months so I was expecting the antibodies to have come down further, as they had a few weeks after I went GF last year from >1300 (range 0-60) down to 310.6 (0-34).

I have been having problems with my eyelids itching like mad and the gritty feeling and I was taking antihistimines for a week when I did the last finger prick test so wondering if they could possibly affect any results.

I think the ferritin and folate very slight improvement is because I started taking ferroglobin slow release. I know they are not the best but are gentle on the stomach and they do contain the cynocoblamin B12 which I know is no use but I have been taking sublingual methocoblamin (sorry for bad spellings).

So I feel I am back to square one again, feeling rotten, anxious and now this awful pain in my ribs, hopefully not a cracked one. I took delivery of some rhodiola drops today, so what with the holy basil and ashwagandha, I'll be like a zombie. I took a couple of paracetomol and just 2.5 of diazepam to help with this pain in my ribs. One of the cats was asleep on my lap and I apparently dozed off and came to making a loud snort which sent me flying about a foot above my lap.

Anyway, thanks again for responding. The weather is dreadful here, raining yet again but hoping it will be better tomorrow so I can get out in the garden and get a bit of Vitamin D. I cant take supplements because of the parathryoidism.

Have a pleasant rest of the weekend,

Elaine

Clutter profile image
Clutter in reply to elaine2447

Elaine2447,

Antihistamines are unlikely to have affected your TSH test but TSH will be lower at 11.15 and after eating.

How long did you try NDT for? It can take 2-3 weeks to get used to it and it may be worth trying it again, after your rib pain is resolved.

You should see your GP about chest pain.

elaine2447 profile image
elaine2447

Good morning Clutter, thanks so much for your kind responses. I always feel a nuisance and I know how busy you all are so I really appreciate your input.

To answer your question, I only took the NDT for five days. The four days I felt like death and stayed in bed until quite late for a couple of days which is so unlike me, as I don't like to sit around, I am on my own and have four indoor cats which is quite difficult with osteoporosis but I did set too and made long wire handles for litter trays and water and feed bowls initially and took the attitude the op was not going to beat me.

Everything makes me anxious so I had cat protective fencing installed to lessen the worry of them disappearing or other cats coming into the garden and even had artificial grass put down as I cant push a mower, have a tiny garden, even smaller now as I wanted an area for the birds to go without being caught by bloomin cats. I made sure I did not or do not bend from the waste and was devastated at the op diagnosis at the time but came to terms with it and was taking some special supplements from the u.s. and corresponding with a very knowledgeable man who read all my test results and would not charge.

Early 2015, I thought I was getting on okay until one day I noticed that my blood calcium was high and gp hadn't noticed. Wrote to this Dr McCormick in the u.s. and he said straight away, stop taking his supplements as they had vitamin d and calcium in and to go back to doctors and get a pth test. What a joke, they don't like doing it etc. etc.

I then went to an endocrinologist a month later in London who I thought knew about hyperparathryodism and she turned out to be totally useless and very expensive. Then by end August 2015 out of the blue I began to get very sick, couldn't eat, racing heart and insomnia so much so I never slept for around 13 weeks. Had terrible neighbour so had to try and sleep in my daughters old bedroom and started taking half a Xanax that a friend from the u.s. had sent me. Then from half a Xanax twice a week it went to a whole Xanax every night and I would take it around midnight and then be wide awake by 3 being woken by my racing heart. Lost two stone in weight, Nobody knew what was wrong, of course it had to be "depression", but I was not depressed just very anxious, worn out and underweight.. I went back to endo who did expensive ultrasound, three in fact of abdomen and lower half and I said well what about my neck as that is what I came to you about, oh yes she said so had an ultrasound too of my neck and it was said there was a possible adenoma there.

Mickey Mouse secretarial service so got left again, went back to GP and bearing in mind I never go to GP's she had the audacity to say "you've seen three different GP's this month" I realised it was hopeless and by that time when it got to three months became so desperate wasn't thinking straight and took a handful of Xanax just to sleep end November 2015. The consequences were that in my stupor I fell down the stairs when I possibly broke my back but hospital forgot to x-ray, my cleaning girl found me and told the paramedics several times I had fallen down the stairs and I was covered in bruises. After that I was well and truly deemed as a nutjob and had a pysch team come to visit who put me on mirtazapine but again I couldn't convince them that I wasn't depressed. Also I read on the side effects of these anti depressants that it can cause bone marrow depression so that didn't please me with advanced osteoporosis.

Anyway, these mirtazapine did at least curb the nausea which was awful and I started putting on weight but I was dubious about them and felt they were masking something else. I have since read that Hashimotos can have a hyper effect inititially and I am now convinced that is what that hellish 13 weeks was about.

I weaned myself off these mirtazipine and then a few months later in March 2016 went to see a top endo surgeon who described my endocrinologist as wishy washy. Wanted his sonographer to do an ultrasound, who said he didn't think I was an adenoma but inflammation on my thyroid and possibly Graves and that I should have an antibodies test, that was March of last year. Surgeon ignored this and said lets concentrate on pumping you full of 50,000 IU of vitamin D for 12 weeks even though I wasn't deplete and see if it stirs up the calcium and parathyroid. I have since learned this is old hat but I went along with it.

So by July had blood tests, no stirred up pth or calcium but hundreds of both types of antibodies which he sat on until October and that is when I got onto this forum and started learning about Hashimotos as I had never heard of it and thought my main worry was PHPT and osteoporosis.

So to get back to how long I was on NDT, 5 days but the fourth day I felt fine which was good as it was my mothers cousins's 100th birthday and I didn't think I would be fit to go. But then the next day I was standing on my vibrating plate (specifically for osteoporosis) which I do every day for months as I refuse to take bisphosphonate and just hope this machine will stop OP getting any worse. I started feeling strange as if I were not here. I got off and sat on the bed and thought I would have to go and lie down on my bed. I got into my bedroom and thought my god I must shut the window as the birds were screaming outside only to find that the screaming was coming from my ears. It was a horrible experience. Still puzzled why I was feeling my old self that birthday day apart from the usual aches and pains, I started investigating and low and behold found a study about Mirtazapine done on healthy individuals where it was found that cortisol was reduced by about 30 percent, so then I found my answer. I had dug out an old 15mg Mirtzapine the night before to make sure I slept. I think the NDT was reacting because my cortisol is too high. I did a finger prick test as I couldn't afford the saliva test (I have got through almost 7000 pounds of my savings on wasted scans, sestamibi, overpriced blood tests etc. etc. (my keyboard is playing up now and doing weird signs, lol) which I know is not the best but it did show my cortisol was top of the range in the morning.

Yesterday my ribs were so awful it was really beginning to worry me but I tend to put up with things until they go away, I really don't want to be told it was a cracked rib caused through the osteoporosis when I am concentrating on the low intensity plate which was very expensive and all these supplements.

I took some rhodolia drops for the first time yesterday afternoon and I did start nodding off but had the most horrible panicky kind of night and this morning I felt like the world was coming to an end feeling totally overwhelmed with anxiety, weakness, pain, primary hyperparathyroidism which can cause bone pain and of course good old Hashi. I am too weak to get in the shower and would cripple my back to lift my arms up to wash my hair even. Am so disappointed as I have only recently got over a frozen shoulder on the other side. Anyway, for the time being I am cutting out the rhodiola and perhaps doing the selenium every other day as the bamboo silica I take every morning has a small amount of selenium. Also I chop up a couple of brazils with my breakfast every morning. All in all I am taking Boron, silica, optibac probiotics, slow release iron, omega 3, holy basil, ashwangandha , vitamin k2 mk4 and mk7, vitamin c, magnesium glycinate, selenium and sublingual B12. Not all at the same time, lol!.

This morning I have taken a bromazepam which I keep for special occasions, they are the upmarket version of diazepam. I don't take them often as although they are very good and lift the weight off ones shoulders and make you feel good but hell if you become addicted. After my husband died suddenly and I was left with a 3 year old when we lived in Australia I was taking twice a day for 8 years, felt wonderful but of course in those days not so much was known about benzos and once I got back to the u.k. GP very reluctant and then Mrs Thatcher made them a luxury item so my GP used to write a private prescription for 50 a year so I had one a week sometimes not even that when things got a bit overwhelming especially with a lively child and I was always busy renovating the house.

So now you know my life story and I bet you wish you hadn't. Once I am over the worst of this back and rib pain, hopefully, I will give the ndt another go but I don't want to be taking mirtazapine which is evidently what helps me cope with the ndt unless it was a sheer coincidence but I don't think so.

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