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Graves/Hashimotos

(3 Posts)
BoredandConfused Tue 11-Jul-17 12:55:39

Was wondering if someone with some knowledge can shed a bit of light on my situation.

I'll keep it as brief as I can...struggled with secondary infertility and had an appointment with a fertility clinic. The consultant said in passing that we should get my thyroid tested. Never thought about it before but did some research and a lot of what I found rang true. Have quite bad mood swings, dreadfully heavy periods, tired all the time, lots of aches and pains- particularly lower back, constant battle with my weight and a couple of other bits and pieces where there have been connections talked about...low blood pressure, RLS etc. Didn't really think about the autoimmune side at that stage and more or less forgot about it as life got in the way and you keep going until something stops you.

Anyway a couple of months back I was browsing the internet and up popped up an ad for blood testing and it brought back the conversation I had had with the consultant and I decided to get a full thyroid panel done. Sent off the sample and results came back as follows with an instruction to pack myself off to the GP:
TSH 0.01 (range 0.27 - 4.3)
FT4 31.67 (range 12-23)
FT3 11.88 (range 3.1 - 6.8)
T4 176.6 (range 64.5 - 142)
TPOAB 76.1 (range 0-34)
TGAB 669.5 (range 0-115)
Was quite surprised because my symptoms appeared to be more hypothyroid than hyperthyroid.
Bit more research from me on the autoimmune side and whilst no one in the family appears to suffer from any thyroid issues (none tested), we have a lot of autoimmune issues...crohns, diabetes, rheumatoid arthritis.
GP ran a set of bloods (only know that my Free T4 was 23.6 and TSH 0.01) put me on PTU and arranged for me to see endocrinologist. Went to see endocrinologist - he examined me...found a bruit over the thyroid, said that I had fine tremors, repeated bloods changed PTU to carbimazole and ordered a scan on my thyroid. Bloods came back:
MCH 24.4 (low)
MCV 75 (low)
LDL cholesterol 3.5 (high)
Blood cholesterol 5.5 (high)
Non- HDL cholesterol 4.1 (high)
No abnormality Cholesterol HDL ratio, blood at 3.9
TSH 4.56 (high)
Free T4 5.2 (low)
TPOAB 83.2 (high)
No ranges...this is how they came back on the letter. All other results normal. So I was now reading hypothyroid. No change to my meds.

Scan appointment came through a month later and had a really informative session. He talked about me having hashimotos, some of the history, how it was relatively common in our part of the world and I came away looking forward to my endo appointment as the meds had made me feel dreadful, I was hoping I would get a real good chat to discuss what was happening.

Bloods repeated at GP a couple of days before my appointment and they rang to say that I had gone severely hypothyroid and should reduce my carbimazole down to 5mg a day from the 20 I had been on.

Got to my consultant appointment, it was an evening one and he was running late. I sat down and he said we're going to change you from PTU to carbimazole. I said we've already done that at the last appointment. Right he said carry on and get your bloods done again in four weeks and back to me in six. I asked what the last bloods had shown because my GP had told me to reduce the dose. He then pulled them up on the system and said "yes reduce the dose". I asked what the scan had shown because we had been talking about hashimotos... he then went looking for the results and said "that's just an inflammation of the thyroid, bloods at the GP in four weeks and see me again in six, I might repeat the scan" and packed me off on my way!

I am now utterly confused and frustrated. From what I've read, all of the results are pointing towards it actually being hashimotos and I'm being treated for hyperthyroid and Graves. I feel absolutely dreadful!
Is there anyone out there with a bit of experience who can cast their eye over my results and give me the benefit of their opinion? I don't want to be a nuisance but something doesn't feel right. I think I was the last appointment of the day and my endocrinologist wanted to go home and hasn't really had a good look at my results... or am I just being someone who has spent too much time on the internet??

phlebasconsidered Wed 12-Jul-17 13:02:21

I have both hashimotos and graves. I ended up vascillating between the two and going up and down until a thyroid storm.burnt the thyroid out. Prior to that I was due to drink radioactive iodine to kill it off.

Took over two years and then about another two to stabilise to just hypo.

BoredandConfused Sat 15-Jul-17 13:26:46

Thanks phlebas. I guess with an early diagnosis I should expect some trial and error. Just got the letter through after my appointment with a confirmation of hashimoto's and reduction in the carbimazole to 5mg. In the meantime, I had been to my GP on an unrelated matter and given that my TSH was 36.5 after my last set of bloods, he told me to lay off the carbimazole all together as I was clearly hypothyroid and to keep treating me as hyper was only going to make me more hypo. I have to go and get my bloods done again on Monday in case my levels change dramatically being off the meds.
Ah well...I guess this is but the start of the rollercoaster!!!

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