Cautiously optimistic!

[jankei]

About six months ago I started treatment for hypothyroidism, after waiting many years for my TSH to reach the magic figure of 10. Now I have access to medical records online I see that it was not the first time and it went up to 12 before. Anyway, I started on only 25 levo, then doctor increased to 50. He left me on that, but I didn't feel well so increased myself to 75. He did, at my request, give me vitamin blood tests, as recommended on here. Vit D was under and he prescribed 1000 D3. I took double dose and this week's test shows I am now just inside "normal". I asked for more, but he said not needed. Well I guess NHS money, so I have ordered my own and will continue. My B12 was just in range, so I have been taking that and B complex as recommended on here. He didn't retest for that though.

Latest test shows TSH 0.88, test taken first thing as per instructions on here. Yipee.

He seems to have give up testing anything else Hypo, so I am just going by how I feel, which for the first time in years is pretty good! I think I will go along with the theory that if I feel good, then everything is working ok. I also take magnesium.

I know Hashis is a tricky little devil and he may come back and give me trouble. So I shouldn't be complacent at this stage.

I want to thank everyone who gives advice on this site. I truly believe we have to take control of our own health in this matter. Get signed up for online access to your medical records, if you can.

[shaws Administrator]

I am not signing up for online access. Could it mean that anyone could eventually look at those i.e. for life insurance etc or people who're just nosy.

[jankei in reply to shaws]

Well Shaws, you certainly took the wind out of my sails! If I had online access for my earlier blood tests I would have know how high my TSH was and could have instigated an earlier start of treatment. Patient Access assure me their site is secure. I retract advising people to sign up, only giving my personal experience of the benefits I have found.

[shaws Administrator in reply to jankei]

For me online services or not.

Not one of the doctors and specialists - even an op on throat - none could detect a hypothyroid patient from ten paces as doctors used to do before the introduction of blood test results along with levothyroxine. Back then they all diagnosed upon symptoms and gave us a trial of NDT which was gradually increased without blood tests.

My doctor - who had taken a very wide range of blood tests when I pleaded with him that there was something very seriously wrong with me (I can imagine him thinking 'neurotic patient'). He said I will do a Full Blood Test and phoned to tell me that everything on that test was fine (23 blood tests in all).

It was just coincidental that a first aider had told me three or four days before that I should have my thyroid hormones checked - I had really never heard/known about thyroid hormones) and I phoned instantly the surgery and asked for a Full Thyroid Function form to be left out for me.

I had had no knowledge of anything 'thyroid' before and what GP was testing but he had phoned to tell me I should have no worries as all of the (23) blood tests were fine. I was very unwell and discharged from the A&E after an overnight stay with 'probably viral with a high cholesterol.

Three days later (when I had got my own test - another doctor phoned to ask who gave me the form and I said 'I did' - she said come and get a prescription you have hypothyroidism. A 100 TSH. I discovered later that amongst the 23 tests and told all was fine - the TSH was 95.5 but beside it it stated - Comment by GP - No action to be taken.

Good job I had my other blood test two days later.

I now have no confidence in any doctor with regard to anything to do with thyroid hormones. Their training now seems so poor and knowledge nil. One of our 'brilliant doctors' now deceased agreed that training was poor. He arranged a Conference to discuss the 'parlous situation of patients' who had hypothyroidism and invited all of the Endocrinologists but one by one they all withdrew.

You see, he was not an Endo but a Virologist.

Few doctors would receive commendations from patients who wrote to the GMC after complaints about him diagnosing/prescribing without blood tests. I doubt any other doctor in the UK had 10,000 testimonials sent to the GMC saying their lives were saved by him.

Previously I had known no-one who had hypo and neither would I have had a clue what it would meant.

It is thanks to TUK that I have slowly learned and recovered before this forum began.

[humanbean in reply to shaws]

I really don't believe that it will matter if you sign up or not, shaws. If the NHS wants to show or sell your data to some organisation it will do, whether or not you've signed up. It was made public that they had already overridden people's opt-outs from care.data. I'm sure I read that the government and/or the NHS has also granted itself the powers to override any opt outs whenever they want.

[SlowDragon Administrator]

As you had high antibodies (Hashimoto's) and symptoms Levothyroxine should have been started as soon as TSH went above range (typically above 4.8-5.0)

I.e. Years ago

[jankei in reply to SlowDragon]

Tell me about it!! My husband found out he had had Hashis for years too. For some reason he doesn't seem to suffer with the ups and downs so much as me and had no idea he was hypo.

[SlowDragon Administrator in reply to jankei]

Hashimoto's seems to affect men very differently

thyroidpharmacist.com/artic...

Perhaps we are affecting worse due to constant variation of monthly cycle.

Many people with Hashimoto's have a partner who also has Hashimoto's

Wether that's coincidence or not .....definitely warrants research in my opinion