Hypothyroidism UK based.: Hi, my recent blood... - MPN Voice

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Hypothyroidism UK based.

Carol0925 profile image
19 Replies

Hi, my recent blood tests have shown a TSH of 6.58 munit/L. I gather this can be Pegasys induced? I also have a low Basophil reading of 0.1 (UK readings). I certainly have most of the symptoms!

Has anyone experienced this? I have an appointment with my Team 11th November.

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Carol0925
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19 Replies
Mishie14 profile image
Mishie14

I was diagnosed with hypo a year before diagnosed with ET and two more years before starting peg. Peg surely did not cause my hypo but now have to watch out for Hashimoto. I have blood tests and see endo doctor every 6 months just in case. Glad you have been tested and able to get treated quickly. Good luck.

Carol0925 profile image
Carol0925 in reply toMishie14

Thanks for replying. In all honesty when I think about it, the symptoms have been here for some time, but they are identical to so many other conditions. I’m in my sixties, so I rest my case 🙄😂 Pleased you’re well controlled and yes watch out for Hashimoto 🤞

C_Anne_Orange profile image
C_Anne_Orange in reply toMishie14

Hi - I have been hypothyroid and on levothyroxine for decades and very stable. Then last month my TSH went up twice - have been on Besremi for 22 months… TSH changed out of the blue plus hives. MPN doc suspended Besremi, Have increased levothyroxine and will get a blood test this coming week. Will be interesting to see new TSH & HCT - hoping they stabilize - I think we have to be vigilant & working with our care team ! Good luck!

Carol0925 profile image
Carol0925 in reply toC_Anne_Orange

Thanks for replying 🙏

ainslie profile image
ainslie

TSH is too high, there is a thyroid forum on Healthunblocked, the idea is TSH should not be more than 1-2 if not on thyroid meds, it’s quite common for Peg to cause hypothyroidism while your on it

Carol0925 profile image
Carol0925 in reply toainslie

Thank you. The range here is 0.30-4.20 👍

ainslie profile image
ainslie in reply toCarol0925

The UK range is likely similar but it’s the old debate “in range” can be very different to optimum and that’s what the guys on the thyroid forums are referring to, plenty of people with thyroid issues on Peg easily correct it by taking thyroid meds, good luck.

hunter5582 profile image
hunter5582

While thyroid issues can be caused by a number of things, you are correct that the interferons can have this as a side effect. PEG can also reduce the leukocytes, including basophiles.

The elevation in TSH is a finding that needs investigation. It requires input from an endocrinologist and a MPN Specialist. While it is possible that this is related to the PEG, it could also be a co-occurring condition. If you were symptomatic prior to starting on PEG, that suggests it may be a co-occurring condition. You will need expert input to sort this out.

Please let us know what you learn and how you get on.

Carol0925 profile image
Carol0925 in reply tohunter5582

Many thanks Hunter and will do.

Scottishterrier profile image
Scottishterrier

Hi I have had et jak2+ since 1994 but I have been on Hu which is down to one a week but I started losing a lot of weight my mum was in hospital so I put the weight loss down to not eating properly when they did my bloods kept getting one minute they said it was hyper thyrodisim then got another diagnosed hypothyroidism but now it's because weight still coming off it is back to hyperthyroidism and on one day it for the rest of my life I am on thyroxineStay safe

Scottish terrier

Solyesh profile image
Solyesh

Hello - my thyroid readings were elevated prior to Peg (always at the "subclinical" leve = < 10) and my GP and MPN specialist both agreed to put me on Levothyroxine. Since starting Peg two years ago - no change in thyroid readings although I do note that if I am not religious about taking the thyroid hormone my readings do vary..

EPguy profile image
EPguy

It's possible your thyroid condition was pre-existing but enhanced by the IFN. In section 5.5 of the USFDA the label :

"Development or exacerbation of autoimmune disorders including...thyroiditis"

Either way there are good treatments for most thyroid conditions.

accessdata.fda.gov/drugsatf...

KLCTJC profile image
KLCTJC

I always had subclinically elevated tsh before starting Besremi, but after starting INF my thyroid got dramatically worse. I was feeling ok, but started medication and has taken a year but it is controlled. And I was grateful I could stay on Besremi. As of right now everything is good.😊

Carol0925 profile image
Carol0925 in reply toKLCTJC

Thanks, interesting, pleased everything is good now! Just checked pending bloods and my HBA1c is red flagged too. Something else to worry about. Thanks goodness I have an appointment Nov 11.

NCB1983 profile image
NCB1983

my elevated TSH was diagnosed before ET and I’m on levothyroxine for it. You should get your TSH checked out. Might be related but might be co-occurring.

Carol0925 profile image
Carol0925 in reply toNCB1983

Hi, it’s 6.58. It was red flagged on my blood results from the 29/10, so very new. My HBA1c has also been red flagged. Lots to discuss at my next appointment.

NCB1983 profile image
NCB1983 in reply toCarol0925

Good luck. I’m sure you’ll get it sorted. Highest mine went to was 42!!! I’m within normal ranges now

ts75 profile image
ts75

Yes got hyperthyroidism (Graves) from Peg after 5 months! Had to stop Peg and now on medication for thyroid 😬

Carol0925 profile image
Carol0925

How’s the medication going, ok I hope? Will they prescribe an alternative to Peg?

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