Any comments would be greatly appreciated.

[lurganknight]

Hi, I am one of the 'silent' watchers on here since last July. I wish I had found this site a long time ago but better late than never. I am astonished at the wealth of knowledge that everyone on here has about the thyroid and, I must admit, I feel a little bit of a fraud to be on here because in comparison with most of you there is very little wrong with me.

I was finally diagnosed as hypo about 6 years ago after several years of being told my tests were 'normal'. I was on 100mcg Almos levo a day. On 8th July last this was inceased to 125mcg (see test results below). However on 19th July I had an urgent letter from the Health Centre telling me to reduce this to 100mcg (see test dated 19th. July).

I did as I was told but at my next appointment with my doctor I said that after over 5 years on medication I felt no different would it be okay to stop taking it and see what happened. To my surprise she agreed. (Test dated 14 Sept '12)

On my last appointment on 16th April 2013 I told her I felt no different after stopping medication, apart from the fact that I slept better even though I still woke up tired. I asked if I should come back in 3 months and she said "No, leave it for 1 year". We also discussed the fact that I would not take statins for the cholesterol. (The good guys are higher than the bad ones apparently.)

I phoned reception to get the results of my test and was told the usual 'normal' but when I requested actual figures and ranges I was given the following:

T4 9.6 (10.6 - 22.7)

TSH 39.77 (0.3 - 4.5)

Cholesterol 6.49

B12 659 (140 - 640)

Folate 5.8 (4.6 - 18.7)

I didn't manage to take down the ferritin results. What worries me is that the good Dr. was looking at these results when she told me I need not come back for a year. I have an appointment with her on Thursday (23rd) and would really appreciate some advice on where to go from here.

Test on 8th July - No Free T3 Free T4 20.6 (10.6 - 22.7) TSH 3.43 (0.3 - 4.5)

Test on 19th July - FT3 5.3 (3.1 - 6.8) FT4 22.6 (10.6 - 22.7) TSH 0.02 (0.3 - 4.5)

Test on 14t Sept - No Free T3 FT4 24.4 (10.6 - 22.7) TSH 0.02 (0.3 - 4.5)

My only other health problem (which I've learnt to live with) is Alopecia Universalis.

HELP!!

[Hidden]

lurganknight, if your Dr is working to the commonly accepted and annoying(reliance on TSH only)protocols it is hugely different to everything I have read or heard.

Your April T4 of 9.6 is too low

TSH is ridiculously high at 39.77 (is that a typo?)

Cholesterol is contentious issue but my test shows anything over 5 is high.

On 8th July your TSH was a little up was it then you were told to take 125mcg?

19th July results would be considered fine in my GP's interpretation.

But I think you know all that.

I was told Alopecia Universalis is an autoimmune condition of unkown origin. My mother had it and under active thyroid.

Maybe you could remind the Doctor of your alopecia and ask about any connection.

If it were me I would take a print out of thyroid levels from a book by a respected Dr and ask for a fuller explanation of her take on it.

When get the print out there may be some recommendations from the Laboratory about results!

It is amazing that you are feeling okay even allowing for us all being different and the narrow view some GP;s take of the thyroid blood tests.

Wish I could be of more help.

Good luck

wyn

[lurganknight in reply to Hidden]

Hi Wyn,

No the TSH of 39.77 is not a typo. Do you think I should tell her that the 19th. July results were going in the right direction?

Briefly, my family history is full of heart attacks and quite a high proportion of them have thyroid problems. I am getting a little nervous because both my parents died of heart attacks.

Thanks for your reply and I will try to get her to look into the autoimmune side of things.

Cathy

[Hidden in reply to lurganknight]

Cathy in answer to your question...I think you should ask for a referral (no messing about) to an Endocrinologist asap to fully discuss past and present thyroid test results, family history, alopecia.

You are important do not allow yourself to be fobbed off or to feel less worthy than the next patient.

I keep all results in folder and use highlighter pen for dates and numbers...can be read at a glance. It is good that you have kept yours.

I carry them with me to all appointments.

Am wishing your Doctor stays home on the day and a bright new one takes a long look at your case

Have you booked a longer appointment? less pressure on you.

Looking forward to your good news.....wyn

[Hidden in reply to Hidden]

Hear hear!

A new GP too sounds a very good idea, if he/she takes as little notice of blood tests as that, (never mind the symptoms) what is the point of seeing a Doctor like that at all!

[lurganknight in reply to Hidden]

That could be the answer....... OR it could then be a case of 'out of the frying pan (they love a good Ulster fry here) into the fire!

Decisions, decisions...... what to do when one is SO indecisive eh.

[shaws in reply to lurganknight]

I agree with the above get an appointment with someone else and levothyroxine at the very least immediately from you GP. Your GP has been negligent for you to have a TSH of 39. Email [e-mail] and ask if she has a N Ireland Endo she may also have a name of a private doctors.

Untreated hypothyroidism can lead to other diseases/complications.

[molliemdz in reply to shaws]

Including heart problems...

[lurganknight in reply to Hidden]

I did actually mention being referred to a specialist at the last appointment Wyn and her reply was "I could do that but she(?) would give you the same information"!!!

Maybe I will suggest that I see the specialist anyway and I might get more tests done

I moved to N. Ireland 14 years ago so I'm not sure if there are any good Endos here or over the border. I may have to do some more research..

My original doctor at this practice is off sick (I believe with breast cancer) so the one I see on a regular basis is probably the best one there. She 'appears' to be helpful but I reckon her heart sinks when she sees me arrive.

[Hidden in reply to lurganknight]

'appears' to be helpful...she is doing nothing.... smarm & charm is not medical treatment or advice.

You may be a challenge to her and her heart may sink ....then she is best suited to a pharmacy counter giving out cough & cold remedies.

Stand up to your 'psychic' Doctor she cannot know all that an Endocrinologist may offer.

wyn

[Marz]

.....maybe you have anti-bodies. Have you had your Anti-TPO checked. Having auto-immune illness of the thyroid may also be the link to your other auto-immune problem. There is often more than one.

My hubby has Hashimotos and his FT4 and FT3 were below the range and TSH now coming down with treatment. He says he feels just fine and only takes 50mcg T4 which increases to 75mcg at weekends !. He's 74 and looks fab - tall bronzed and also good looking ! - now I am getting carried away !! However of course, I live with him so know that he is not fine - symptoms creep up slowly and are barely discernible by the sufferer and can always be blamed on something else. Think it can be like that for many of us....

I too have Hashimotos but my journey has been very different than my husbands. So I think what I am trying to say is that we are all individuals and our bodies are unique so we have differing experiences. There is a list somewhere of 300 symptoms linked to Hypothyroidism - which goes some way to supporting the above - many of the items we would not even think of as being connected.

Shouldn't worry about your Cholesterol - that's a major ingredient in the brain ! You may find that without T4 it may begin to escalate slowly. From what I have read recently many of the hormone treatments are preventative treatments. Have you browsed the book by Thierry Hertoghe - The Hormone Solution ? I found it interesting....

Hope all goes well..

[cein in reply to Marz]

I was told by an Endo 6 years ago that I had high cholestrol with a trygliceride level of 7 ( was more concerned about that and my weight than my thyroid, he never mentioned my thyroid levels ) .. went straight to my GP worried to death as that was all the info he gave me ..... my GP told me not to worry people with hypo have a higher reading of trygliceride and as you take both readings to give a final score mine was only 3.

[lurganknight in reply to cein]

Hi,

When I had the first high result the practice nurse said I'd have to go on statins. When I refused she said I'd have to see the doctor. When I saw him (not my ususal doctor) he got very huffy and said they would't do any more tests for cholesterol. Then put a note that I'd refused medication on my file.

Such is life eh!

[Hidden in reply to lurganknight]

How many more hints do you need that this Doctor doesn't have a clue!

[lurganknight in reply to Hidden]

From what I read on here she would appear to be fairly average. It would be nice though if she took her eyes of the computer screen and took my temp. blood pressure, pulse etc. Doctors don't seem to do this any more as far as I can see. Maybe there is a new 'don't touch the patient' policy lol

[Hidden in reply to lurganknight]

Unfortunately I think you might be right! There are certainly all types at the practice I go to, and some are best avoided!

These days they seem keen to run tests then despite them being miles off, they totally ignore them.

Proves how little comeback there is for ineptitude and incompetence, and how Shipman got away with murder for years!

[Issy in reply to lurganknight]

I would make an oifficial complaint if I believed that a high cholesterol was significant.

As it is, I'd get LDL and triglycerides checked every so often.

[lurganknight in reply to Marz]

Hello Marz,

Thanks for your reply. I do have some books on thyroid problems but I would need a week away somewhere nice to really get into them as my concentration and memory aint what they used to be

I am not worried about the cholesterol bit as I know the body needs it and also it was 4.6 in 2005 (BUPA test - when money was no object lol). At the same test my TSH was 5.20 (0.3 - 5.0) and FT4 14.3 (10.3 - 24.5).

I have not read the book you mention. I will look it up.

[shaws in reply to lurganknight]

If you need to borrow a book, for the cost of postage Thyroiduk.org may have one you would like to read.

[Confused77]

How can they say your levels are normal when the only result the receptionist gave you that is actually normal is your folate level?! I think you should discuss these results with your GP.

[lurganknight in reply to Confused77]

Do you think the folate level is good, I thought it was a bit on the low side. My B12 would seem to be the best result. Needless to say NO D3...... I may try asking for it again.

I treat the Reception ladies with kid gloves, I find you get more information going back a bit in your records that way...........smile....... please .......... thank you........grovel........ isn't the weather awful ........ kind of thing

The things you have to do!!!

[Confused77 in reply to lurganknight]

I only meant that the folate is the only one that is actually within the reference range. I'm afraid I don't know enough to comment on whether it is ok or still a bit low. Similarly I don't know enough about B12 to know whether it is ok to be higher than the reference range.

I never trust surgery receptionists with results anymore. They once told me an abnormal ECG was normal and failed to inform my husband of the results of a scan showing that he had a kidney stone the size of a golf ball! Now we always make appointments with the GP to get any results and have made it clear why we do that.

[Hiphypo]

Wish I could help but it is way out of my limited knowledge. Just amazed that you are still functioning with a TSH that high!

Best of luck with your quest for the right treatment.

[lurganknight in reply to Hiphypo]

Yeah, I don't feel bad considering.......... and in comparison with some on here I'm flying it as they say. It's only the family history with hearts that worries me...... oh and the bad memory. I have the attention span of a gnat.

[molliemdz in reply to lurganknight]

Me too! And I'm only 38.

[Issy]

Do you want your hair back?

[lurganknight in reply to Issy]

After 40+ years I've learnt to live with (or even without) it. Lots of people admire my 'hair' lol ..... they probably wouldn't do that if it were real.

I DO miss my eyelashes but the fact I wear glasses (upper part dark tinted) helps. So I guess the answer is 'not bothered about hair loss'

[Issy]

So you have bad memory, poor concentration, severe hair loss - and no thyroid symptoms?

And familial heart issues - what were their thyroid stats?

[lurganknight in reply to Issy]

1 brother, 1 sister, 1 aunt ........ all hypo. I wouldn't know about others but I think one

of my grannie's sister was hyper.