letter from endo: it says i feel very unwell... - Thyroid UK

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letter from endo

mandy72 profile image
19 Replies

it says i feel very unwell exhausted and aching all over

stopped thyroxine due to fast heart rate

24 hour tape normal

tearful breathless and anxious

50MG trazadone for sleep

clinically eutheroid and not cushingoid (whatever that means)

says i feel my life is not worth living???

weight gain over the last 3 years

no other significant illnesses in the past

weight noted

blood pressure 160/78

no abnormalities cardiovascular or respitory nor elementry systems

hypo does not contribute to all my symptons allthough many are due to hypo

he suspects other factors are the cause of symptons

i was certainly eutheroid in september tsh10.8

didnt feel better with treatment so that goes against thyroid being responsible for symptons

not sure if to start thyroxine again or not

bloods due 10th jan

will restart thyroxine if tsh is more than 10 and t4 less than 6

other tests arranged for possibility of undisclosed problems

symptons of anxiety and lowering of the mood wonder if would benefit further help in terms of counselling or SSRI

bloods to be taken are FREE T4 TSH FULL BLOOD COUNT CRP LTF'S CALCIUM

Bear in mind when i had my throat scan i was told small thyroid and my antibodies were attacking thryroid

my gp confirmed end stage thyroiditis

i either have a thyroid prob or i dont

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mandy72
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19 Replies
rosetrees profile image
rosetrees

Your have thyroid problems and an endo with a brain the size of your end stage thyroid.

mandy72 profile image
mandy72 in reply torosetrees

makes you wonder how they pass the test to become specialists dont it?

rosetrees profile image
rosetrees

"will restart thyroxine if tsh is more than 10 and t4 less than 6"

That isn't even ignorance or incompetence. That's deliberate, calculated, malpractice.

It would be different if you were asymptomatic, but you aren't. It's because of your symptoms that you went to see him in the first place.

mandy72 profile image
mandy72 in reply torosetrees

may need to get another referral if thats the case Salisbury seems my best option for NHS

alangardner profile image
alangardner

i think you need to insist that your doctor carries out t3/b12/ferretin /follate and vit d3 tests AT THE SAME TIME for your full diagnosis of your condition and therefor optimum treatment ---- when you get the results [ make sure you request copies from your gp ] post them on here and I am certain you will receive some excellent informative and pertinent advice ......alan x

mandy72 profile image
mandy72 in reply toalangardner

i can try alan but the nurse can be a royal B at times

i asked for my iron to be checked a while ago as thought i may be aneamic and she said no i was fine and she will only test what is requested

i will ask though

i thought b12 ferretin ect was in the full blood count?

alangardner profile image
alangardner in reply tomandy72

my gp states on the 'blood form ' all the tests and them adds ALL TESTS REQESTED BY CONSULTANT ...... the nurse or lab CANNOT REFUTE that the tests are not carried out ---- a little tip from my own doctor ---- ....hope this helps alan x

mandy72 profile image
mandy72 in reply toalangardner

ill take a list with me that needs testing and if refused ill complain to practice manager

helvella profile image
helvellaAdministrator in reply tomandy72

B12 and Ferritin are not in the Full Blood Count. Exactly what is in an FBC might vary slightly from lab to lab.

You can find out more from here:

labtestsonline.org.uk/under...

Rod

mandy72 profile image
mandy72 in reply tohelvella

thankyou

alangardner profile image
alangardner in reply tohelvella

they need to be individually stated on the form .....alan

in reply tomandy72

1) Full Blood count (FBC) tests blood cells - red, white, also platelets and clotting, their size can indicate anaemia, low Haemoglobin indicates anaemia too (but this is topped up by the storage iron - ferritin).

2) For B12, folate, ferritin it's an additional Haematinic test, high folate can mask low B12.

3) U&Es (Urea & Electrolytes) are often done too (for kidney function) to check salt, potassium etc.

Vitamin D and calcium should be tested as well. They usually do diabetes & possibly cholesterol (these are fasting tests). Then consider adrenal testing (hardly ever done on NHS tho').

It is quite possible that low mineral and vitamins are stopping the Levo working. Unfortunately we often see that deficiencies in these are often ignored in favour of alternative medication. Hope this helps a bit. J :D

Rod's link explains better. (I was too slow!)

mandy72 profile image
mandy72

what does this mean?

clinically eutheroid and not cushingoid

bantam12 profile image
bantam12 in reply tomandy72

It means your thyroid is clinically normal and you don't have cushings.

danceforever profile image
danceforever in reply tobantam12

But how can the doctor say you are clinically normal with a tsh of 10?

that's neglect. you should have been put on thyroxine with a tsh of that number. GET A NEW DOCTOR NOW!....don't waste time with doctors who are incompetent. this is YOUR life, not their ego.

mandy72 profile image
mandy72 in reply todanceforever

i was treated when i had a TSH10 then got fast heart rate so was told to stop meds my TSH in august was 5.2 or 5.4

in reply tomandy72

I had a fast heart rate when I first began treatment with thyroxine for my hypothyroidism, and again when I had an increase in thyroxine last winter. I also had cramps and aches with leg and arm muscles. My opinion is that this happened to me because my body had become so used to being ill and not having enough thyroxine. My heart, leg and arm muscles were not used to thyroxine. I'm very sensitive to thyroxine and have to increase very slowly. When I increase very slowly, I don't have the problems. If I didn't take thyroxine, I'd be very ill again.

I feel so sorry and wish you better for the future.

ellarose1234 profile image
ellarose1234

I would send the letter to the GMC. It's not easy as they make it as difficult as possible. Obviously wanting to put you off. I ended up here:

gmc-uk.org/A4_letter_of_com...

When you think what notice they took of the Scottish Ladies I don't have much hope for you but at least it will have to be recorded. The again if they keep receiving letters containing a load of ignorant cr*p from Endos then perhaps they might take some notice. I wouldn't hold your breath though

I agree with danceforever...get rid of your doctor...ask to see a different endo and start from the beginning with a doctor who listens. Maybe...just maybe you might get some decent treatment.

Vinylrecords profile image
Vinylrecords

Good grief! Aren't the doctor's medical notes just annoying. Talk about off topic why is everything emotional to MD's are they still in the Victorian era of the hysterical woman? In my non medical humble opinion you have hypothyroidism. Probably Hashi's. I see they will be doing a CRP or c-reactive protein looking for systemic inflammation. Great test but will not be able to tell what kind of inflammation. Just that you have it but you will not receive a diagnosis with just a crp. My CRP was high too. They ignored it. They checked 6 months later to see if it dropped and it did. Is this doctor a "shrink" or a medical doctor? Nothing annoys me more when a general practioner crosses the line and starts diagnosing mental issues or prescribing psychotropic drugs. They are not trained. I believe it is because they are not well educated enough to stick with their own specialty and go outside their realm of expertise to appear knowledgeable. Ugh! So sorry for you. I have been there as well. I have Hashi's and a host of other issues. I had to finally demand from these so called professionals but it turned out I was correct when my thyroid completely crashed. They kept checking T3 and T4 and my issue was a TSH that was so high they coined the phrase "Off The Wall." Unbelievable. I suppose we are all put through this nightmare. But that is certainly no consolation. Hang in there. I know it is extremely difficult. Why do actors and sports figures get immediate diagnoses? They never have to wait 10 years for a diagnosis. I think it may have something to do with money???

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