Another rant!

[Horsey07]

I just finished being talked at by my new GP. Despite receiving the letter from my neurologist and having a copy of my test results from Blue Horizon she will not prescribe Levothyroxine for me. She does not accept that private blood test results are valid, and actually said if my neurologist had wanted me to take Levothyroxine he could have prescribed it! I honestly can’t believe this. I pointed out that he said I have virtually the full raft of symptoms, that my TgAb was 318 (<115). I added that NICE guidelines state that those criteria alone are enough to trial Levo and that a thyroid specialist had confirmed Hashimoto’s. She would not budge. I feel like I’ve had all the stuffing knocked out of me and I simply don’t have enough fight left to argue with her. I’m now clinging to the knowledge that I have an appointment with the thyroid specialist in mid-October.

[SeasideSusie Remembering]

Horsey7

So she has gone back on her word? What happened to her saying she would give you a trial of Levo:

"she has agreed to start me on a trial of Levothyroxine as soon as she receives the letter from my neurologist."

My respect for doctors flew out the window a very long time ago!

[Horsey07 in reply to SeasideSusie]

Completely back tracked, the whole discussion became utterly ridiculous. She said my neurologist couldn’t possibly be a thyroid expert because she isn’t! Blue Horizon test results couldn’t be trusted, totally ignored my point about NICE guidelines, and banged on about my TSH being in range.

[shaws Administrator in reply to Horsey07]

The common saying that 'ignorance is bliss' seems to have happened to the doctor you consulted. I think she is ignorant and doesn't know how best to treat hypo patients.

Money is spent by many members to try to find a way to recover their health when many doctors are unable to do so. Most don't even know the most basic of symptoms at all. Whereas we used to (before blood tests were introduced) have doctors who were aware of all the clinical symptoms and we got a trial of NDTs (natural dessicated thyroid hormones) from 1892 and even up to the present day. Unfortunately, those who should know more than us and are supposed to be 'experts' are anything but expert with the result that their patients suffer with clinical symptoms. The professionals seem to be completely unaware of any clinical symptoms, neither are they aware of what is best to prescribe to relieve them.

[Lalatoot]

So sorry to hear this. What a difference a week makes.This is why so many end up self medicating. And end up more knowledgeable than the doctors.

[Horsey07 in reply to Lalatoot]

It’s obviously going to be the only way to protect my health. Just as well I can afford it. The tragedy is that a very dear friend who had been on Levo for years started forgetting to take it. He’s now suffering from dementia and confined to a nursing home where he knows no one and is convinced he’s been kidnapped. There’s no way I’m risking that.

[shaws Administrator in reply to Horsey07]

It is awful about your friend. I'd ask his nursing home to request that he has a Full Thyroid Blood test and I am assuming that his Free T4 and Free T3 will be very low. It is T3 that runs our whole body from head to toe and brain and heart have the most T3 receptor cells.

The doctor who looks after him in the nursing home should do a Full Thyroid Blood Test with blood draw taken early a.m. and a gap of 24 hours from last dose of levo and the test and take it afterwards. He might well need to be prescribed T3 if he's unable to convert levothyroxine (T4) into the T3 his brain in particular needs to function. I hope it isn't too late. Brain and heart have to the most T3 receptor cells. T4 isn't of use if we cannot convert to T3.

[Horsey07 in reply to shaws]

Thank you again, Shaws. I’ll relay that to his sister. Fingers very firmly crossed that it helps him.

[SlowDragon Administrator]

Are these your most recent results?

healthunlocked.com/thyroidu...

You need to retest again before seeing thyroid specialist in October

Presumably you are now supplementing to improve very low B12 and low vitamin D

[Horsey07 in reply to SlowDragon]

Those are the results, I was wondering if I should retest, thank you. I have been supplementing with a B complex and Vitamin C and D+k3. I had to stop for a few days as something has been giving me painful stomach cramps, now restarting one by one to identify the culprit.

[SlowDragon Administrator in reply to Horsey07]

With such low B12 you likely need a separate B12 as well as vitamin B complex

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

But as vegetarian, likely to need both B12 and B complex

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

[Horsey07 in reply to SlowDragon]

Wow! That recommendation is 10 times the amount in the supplement I’m taking. Thank you! I’ll order some separate B12 today.

[shaws Administrator in reply to Horsey07]

If you have not yet had your blood tested to see if you have Pernicious Anaemia do not take B12 supplements until you have confirmation of having P.A. or not. If you do have P.A. you will have to have monthly B12 injections.

P.A. is another autoimmune condition that I also have as did my mother.

My mother's doctor told her she needed no more B12 injections as her 'bloods were fine'. Both my sister and I thought that was 'good' but we didn't know what hell was ahead due to my mother developing stomach cancer because of the lack of doctor's knowledge and I assume for not getting B12 injections restored.

[Horsey07 in reply to shaws]

Thank you, Shaws. What a terrible thing to happen to your poor mother. The PA society didn’t think my bloods showed anything to be concerned about, but I’m happy to see if I can get a test if you suspect otherwise.

[SlowDragon Administrator in reply to Horsey07]

As a vegetarian it’s more likely deficient due to diet

[Horsey07 in reply to SlowDragon]

I sincerely hope so, I really don’t need anything else to deal with.