So Very Poorly: I've been feeling so bad that I... - Thyroid UK

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So Very Poorly

hlinbaker profile image
15 Replies

I've been feeling so bad that I haven't been able to do much of anything, even to type.

I have had some recent blood tests that I persuaded the endo to take following advice given here (thanks so much) and the doc says these are 'low but normal' no further action needed? really? I feel like poo.

B12, Serum 189 (range 150-650)

Red Cell Folate 345 (range 140-836)

Vitamin D (on suppements) 37 (no range given but optimal concentration considered to be 75nmol/L as reported by Addenbrookes Hospital)

TSH 4.26 (Optimal range 1.0-2.0)(ref range 0.4-4.0)

Total T4 95.0 (optimal range 77-150)(ref range 58-154)

Free FT4 12.2 (optimal range 12-20)(ref range10-22)

Free T3 (FT3) 5.8 (optimal range 3.4-6.0)(ref range 2.8-6.5)

FT4:FT3 ratio 2.1 (optimal range 2.5-4.0)(ref range 2.0-4.5)

Reverse T3 (rT3) 0.35 (optimal range 0.14-0.48)(ref range 0.14-0.54)

Thyroglobulin (TG) 20 (optimal range <35)(ref range 0-40)

Peroxidase (TPO) 13.8 (optimal range <30)(ref range 0-35)

The endo says that I'm 'not really hypo' because my antibody tests prove that - when I raised an eyebrow she explained that she had 'given me the benefit of the doubt' given my family history and 'allowed' me a trial of 50mcg Levothyroxine.

After much pleading she has 'allowed' me 75mcg with another blood test in two months.

I feel so hopeless and so awful that I just want to give up

If everything is normal, why on earth do I feel like this. If anyone has any suggestions on what I can do I'd be really grateful.

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hlinbaker
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15 Replies
rosetrees profile image
rosetrees

"benefit of the doubt". Which planet is she on? I still felt **** when my TSH fell to 2.5. I didn't start to improve til my TSH fell again. Your results even say that the "optimal" range is below 2. Your T3 and T4 are also low.

Doctors like a one-size-fits-all approach. Sadly, it doesn't.

My suggestion would be to add in nutri-thyroid and nutri-adrenal tablets. Your B12 and Vit D levels are also too low.

I take a vit B12 oral spray, Vit D tablets, along with Vit C and Co-enzyme Q - the last three recommended by Dr P.

Can you get an appointment to see him? There's a list of his clinic dates here tpauk.com/content/1330/dr-p... and I think he also offers telephone and written consultations.

rosetrees profile image
rosetrees in reply to rosetrees

ps - hope that link's ok - just realised it's to a rival site.

galathea profile image
galathea in reply to rosetrees

The sites are not rivals, both want the same outcome, healthy happy patients with well treated thyroid, but they have differing approaches.

One site wants the doctors on board, the other is prepared to challenge!

I support both sites!

Xx

hlinbaker profile image
hlinbaker in reply to rosetrees

Thank you so much, I will definitely look into this

Ansteynomad profile image
Ansteynomad

Yup, B12 so low that your GP should really be offering you injections, Vitamin D still way too low - I take a 5,000iu gelcap every other day to maintain - used to take it every day, TSH over range, FT4 nearly bottom of range - what planet is she on? You need your ferritin checking as well.

I have to say though, if you can get B12, D and ferritin where they should be, you will feel a whole lot better, even before you tackle the thyroid issue.

AN

hlinbaker profile image
hlinbaker in reply to Ansteynomad

5000iu? The GP told me to buy the strongest one that Boots sell and it's 25iu - no wonder it's having no effect! i need to invest in some stronger vit D for sure

Ferritin is on the printout ( I'm so happy for the advice on this forum about getting a copy of results - it took 3 goes but eventually I managed to find someone who was willing to print them out for me!)

Yes, Ferritin is 39 (range 12-195)

Is it just me or are these 'ranges' enormous?

shaws profile image
shawsAdministrator

I wonder if your GP is qualified!!! Your B12 is soooo low and can cause lots of symptoms and neurological damage.You can order from Amazon methylcobalamin B12 in lozenges or sublingual. Get the highest dose as you cannot overdose as excess is excreted in urine. Vit D as you say is low. Both these vitamins are usually deficient in hypothyroidism.

Your TSH is too high and 50mcg is only a starting dose. If you have symptoms ask for an increase in 6 weeks. Don't beat about the bush if you are feeling rough. You have to understand that Thyroid gland problems seem to be an unknown quantity in the medical profession and so many patients are kept unwell due to some fairy tale 'exquisite TSH'. We have to have a TSH 1 or below and some need it suppressed.

amazon.co.uk/s/ref=nb_sb_no...

Clarebear profile image
Clarebear in reply to shaws

Even worse - I think this is an endo :(

You definitely need an increase - your TSH is too high and your Ft4 is too low. I don't agree about the antibodies - I don't have antibodies and am most definitely hypo. Autoimmune is the most common cause of hypothyroidism in the developed world, but there are other causes too. Also my endo told me that some people test negative for antibodies but the cause is still autoimmune.

I think you should ask to be referred to another endo, but I would get recommendations from here about a good one. Hope you feel better soon. xx

hlinbaker profile image
hlinbaker in reply to Clarebear

Thanks Clarebear. Yes it's an endo. She cannot see a problem with these results and has asked my GP to refer me to an ME/CFS service

shaws profile image
shawsAdministrator in reply to hlinbaker

Read this question in Dr Lowe dated October 20, 2004

web.archive.org/web/2010122...

It's a big learning curve but you have to read and research to get well, despite GP's insisting it's not connected to hypo.

Before the TSH blood test doctors were trained in clinical symptoms of thyroid gland problems and this page will tell you how one doctor came to be involved when he (a virologist) was asked to look at patients who were suffering from unknown symptoms. This was due to the fact that the TSH was now being used as a diagnosis.

worldthyroidregister.com/Go...

hlinbaker profile image
hlinbaker in reply to shaws

Thanks so much. If I discuss injections do you think they'll look at me like I have two heads.

Honestly, as far as the docs (both the GP and Endo) my results are normal. Beside the B12 result is handscribbled note - 'low but normal range' no further action

Heloise profile image
Heloise

stopthethyroidmadness.com/r...

There is a lot of information about reverse T3. Since you have all your ranges, I thought you might like to know there are statistics behind them.

hlinbaker profile image
hlinbaker in reply to Heloise

Thank you so much Heloise. I will take a look

hlinbaker profile image
hlinbaker

The tests I had were not offered by the NHS doc - who did TSH only. These were from Genova diagnostics, which I ordered through the TUK website

Terricotta profile image
Terricotta

Hi hlinbaker, what is your recent history? Why did you have these tests done? How do you normally feel from morning to night? And what do you usually do during the day? Terricotta

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