What happens if you don't get treated?

What happens if you don't get treated?

Hi,

I'm going through more testing at the minute. Not on any medication.

My results have been 

Feb

TSH 5.98

Free T4 10.7

Enlarged thyroid, Dr said referring me to endo. Also more tests for antibodies.

March

TSH 3.44

TPO ab 1300

Retesting in a few weeks.

I know my antibodies are high, Dr has said its Graves, I assumed Hashimotos. I have questioned it but she's explained it's defo Graves but that I'm hypothyroid. Maybe someone can help me interpret this??

Anyway, let's say my next results stay under the magic 5.5, what is likely to happen? Dr has said my thyroid WILL be destroyed, just a matter of time. In the mean time I kind of have to suffer the symptoms.

A few years ago I was diagnosed with CFS and although I did sort myself a lot I never really got over it until I got pregnant in 2012. Had a good pregnancy, felt the best I had in years, also post preg felt great. I lost a lot of weight (perhaps this is when Dr thinks I was hyper). I consistently lost until last Feb, then I've started to gain and I'm now a stone back on from the 3.5 I lost. I was overweight pre preg so losing was a good thing and put me at a healthy 9st 10lb. I put it down to being very active (I wasn't pre preg at all), breastfeeding and being really happy. 

Sorry I've digressed a little, I looked back over results from 2010 (when I was CFS diagnosed) and I'm not overly happy. My thyroid and MCH don't look great, can anyone give me their expert views on my current and history of results please? 

Many thanks

Mel

16 Replies

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  • I am no expert in this but looks like Hashimotos hypothyroidism to me and will hopefully be treated. I thought Graves was different antibodies? Also your red cells are enlarged- did you ever get your B12 checked as this can cause this and pernicious anaemia is another autoimmune illness. All the best with getting treatment. Good luck!

  • She seemed adamant it's Graves and Hypo - totally doesn't make sense to me. I was 100% sure it was Hashimotos. 

    I've only just picked up on the b12 possibility so will raise this with GP. 

  • When you say red cells do you mean the MCH?? 

  • Yes MCV and MCH can be raised in B12/folate deficiency as far as I know.

  • Yes I'm finding that out now....

  • Well, it's possible your doctor has done the tests for Graves but the antibodies result you have there confirms Hashimoto's (you can have both Graves and Hashimoto's together). But if the doctor hasn't actually tested TRAb and is only looking at TPO, that would mean you're right and she's likely to be wrong. :) See labtestsonline.org.uk/under... for more on this. 

    Given your history, it would be good to get you started on thyroid hormone replacement sooner rather than later. Unfortunately many doctors - yours included - are wedded to the idea that TSH needs to be much higher. It doesn't, and it's likely you'll feel pretty rubbish while you're waiting for more of your thyroid to be destroyed...

    Is there another, perhaps more experienced, doctor in the practice you can see?

  • I have had a print out too just in case some results were missing but they aren't. It's the same as here so defo not tested anything else. When I said I thought Hashimotos she said "no definitely not, she's not come across many of those, people with that have very high antibodies"

    I'm concerned she just doesn't want to admit she's wrong. 

  • Well, she is definitely wrong if she believes Hashi's patients don't get high antibodies - they can and they do.  As you'll have seen in the link from my earlier post, she really needs to have tested for TSH receptor antibodies which it doesn't appear she's done.

  • No I think she meant Hashimotos were way higher than my ab results 

  • They couldn't be - 1300 is as high as many lab ranges go!

  • Really? She made it sound like 1300 is nothing

  • Oh dear. Honestly - see if there's another doctor at the practice you can see! This one would rather let you suffer for years than treat you... :(

  • She seemed really pro helping though that's what's weird. Initially, after my 5.98 result prescribed levo but now that's dropped she said let's give it a couple of months. I didn't start taking levo as wanted the further tests first. Don't ask why, think I freaked out and went into denial!

  • May I please ask where you do your blood tests or what app you use to keep track of your results? Is this a private blood test ? I'm considering going private.. Thank you 

  • Just nhs, this is the 'Patient' app.

  • Ahh thank you very much, they never told me this was an option. Also need to ask my health centre for access for medical records. 

    Thanks again for your help :) 

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