Hi. I recently posted asking if anyone else had ET and Hypothyroidism and it seems a lot of us do. I have just been looking at hypothyroid symptoms as I am experiencing new symptoms and my latest blood test showed my tsh was rising and my t4 dropping considerably. I saw that one of the symptoms mentioned as being caused by Hypothyroidism was high MPV which I found interesting and wondered if anyone else thought there could be a connection. I am wondering if my platelet counts might improve if my thyroid could get properly treated. As others might know as long as your results come into their range they say its fine regardless and the range is 10 -20. In the past year I have had 26,16 and now 12. It shouldn't be so erratic if treated properly and I feel it can impact on your health in other areas. Trouble is gps dismiss your concerns and haemotology say talk to your gp. Any other experiences of this ?
ET and Hypothyroidism : Hi. I recently posted... - MPN Voice
ET and Hypothyroidism
Yes . I have Hashimoto s , hypothyroid .
GPS are notorious at saying everything is fine when you know it isn’t .
Have you looked at Thyroid forum ?
There are some very knowledgeable strong minded determined people on it.
Post your results and you will get sound advice .
It’s important to get our whole body in as much balance as is possible for things to function better. One thing effects another . Including our mind / emotions.
What are your vitamin levels like ?
Hi jodaryI have had et jak2+ I have lost so much weight over the couple of years and felt dreadful flu like symptoms i was given antibiotics and put through tests from haematology and gastrointestinal consultants on hu and Dypridamole100mg but it got that bad phoned gp so they arranged bloods to be done and within two days I got phone call to say that I have been diagnosed with hyperthyroidism so take 25mg thyroxine daily but no real explanation of what it is and am I on thyroxine for rest of life makes you wonder if et also attacks the thyroid gland
Stay safe
Best wishes
Scottish Terrier xx
Interesting that you have both. Can take time to diagnose hypothyroidism especially if they aren't testing for it. Thyroxine is for life but only replaces what you should produce although 25mcg is only a starting dose. The symptoms of hypothyroidism are vast and can affect every cell in your body hence why I am curious about the connection. There's a great Thyroid forum on health unlocked as well.
I have been on thyroxine for 30 yrs and just been diagnosed with E
T with JAK2 mutation I am wondering if there is a connection I take
100g a day
You have been on thyroxine for a similar length of time to me. I think hypothyroidism is quite common in middle age so a lot of people don't start thyroxine until then . If you ask gp or haematologist I am sure they will dismiss any connection. My thoughts are that if you are under medicated your body cannot function efficiently and a lot of people are under medicated because of the range which is considered to be acceptable. The blood results should be considered along with how the patient feels. This is the best indicator that you are on the right dose for your body. It is a real battle with gps who think an annual blood test is adequate and as long as it falls somewhere within their range will be ticked as no action required. No consulting with the patient who could still be feeling ill, and no monitoring of whether the result has changed dramatically. There could very well be a connection as to why your bone marrow doesn't function correctly, but I don't think anyone will listen. Just give you more medication which will potentially give you other problems and then more medication for those problems.
Hi jodary .
I'm waiting for the results of a Hypothyroid test at the moment. I should hear of the test results next week.
I have PV and also had a parathyroid gland removed a few years ago as I was diagnosed with Hyperparathyroidism - There are many similarities between the two as far as symptoms are concerned. I'm presuming that I haven't got another rogue parathyroid as my PTH levels were within range a few weeks ago.
Thanks. I am interested to know if the hypothyroidism actually causes the high platelets. I have been hypothyroid for 35+ years. ET diagnosed 9 years ago. I am trying to get my thyroid levels improved to see if it affects platelet count although it's possible the hypothyroidism could affect bone marrow and the damage is already done. Recently my thyroid levels have strangely become more erratic and my platelets refusing to budge despite being on Hydroxy. So now I don't know if Hydroxy is affecting the thyroxine although of course the drs say no it doesn't.
I’m PV JAK 2+ and since that diagnosis was diagnosed with hypothyroidism.
Thanks, its whether hypothyroidism can cause MPN . I have been hypothyroid for 35+ years but MPN diagnosed 9 years ago.
Interesting.
Hi jodaryI was diagnosed at gp surgery after blood tests its hyperthyroidism that I have and on 25mg of thyroxine
Stay safe
Best wishes
Scottish Terrier
I thought thyroxine was only used in hypothyroidism as it replaces what your body doesn't produce. Hyperthyroidism usually means you over produce. Are u taking medication to knock your thyroid out ?
They have not said just that it is to control the antibodies it has apart from bloods been done over phone consultations
I wish we could get more back to normal regarding phone consultations. I have been to dentist several times and to haemotology but you can't see a gp face to face unless they deem it necessary. I find telephone much less satisfactory.
Yes have hypothyroidism (under active thyroid ,20yrs)and ET jaks2+ (5yrs), on both HU 500mg and thyroxine 125mg . Plus have hypertension so drugs for that .. feel like I rattle. But the bloods come back into the normal levels , so I assume things are ok. That’s what both gps and consultants say .. Still can’t lose weight , still ache everywhere looking at fibromyalgia with gp at moment.. So frustrating when you know you don’t feel right but get no feed back from doctors. Most of the time you are asking them things you have picked up from different forums , that might help your situation. We are all so different. Wishing you luck on quest for information.
The ranges are quite big. CurrentlyT4 10 -20 in my area. Mine was 26 that was apparently OK cos then their range at the time was 12-24. Then after their range changed T4 was 19 then 16 now 12. All apparently OK. Yet you can feel drastically different if you have low T4 and your T3 is also low. I find it very strange that you can't lose weight and have aches both obvious hypothyroid symptoms yet they are now looking for another reason. In range is not necessarily making you feel well , they should look at the tsh, T4 and most importantly T3 as that's the hormone your body needs and is what the body converts T4 to. There is a good Thyroid forum on health unlocked , if you post your blood results they will give you good advice including vitamins your thyroid needs. You could feel so much better and my interest is whether platelets could be affected if your body is so under medicated that its not functioning properly.
I think depending on what meds you are on the thyroid is checked periodically. Frustrating when you are sent around in circles.I would say that persistency pays off. Have you seen a consultant regarding it?
Easy for me to say. Getting a GP appointment is really difficult. Maybe request your heamo to ask GP to follow it up as it’s having an impact on your blood results.
The thyroid is checked periodically but the range is big currently 10-20 for T4 . The problem is when your results change coinciding with you feeling under the weather and all they say is that you are in range. Still in range. The Haemotology mentioned it in a letter to GP which seems to have been ignored. I have a telephone appointment soon with GP but I have 30+ years experience with them and all you get is you are in range. I did see a consultant years ago and he was the same. I just think that if you are under medicated with one condition it's entirely possible it will impact in other areas of your health. The thyroid Forum is full of people who are self medicating and having their bloods done by Medichecks which is a sorry state of affairs.
‘You are in range’ how I hate that phrase. The norm yes but just maybe not for you. Do you keep a copy of your blood results?I had a Stroke aged 50. They came to the conclusion that it was my cholesterol. Then they said it’s well within range- below 4 but not for you!! Proves a point doesn’t it🥴.
Yes I never got to know them at first. It was over 35 years ago and things were different then. But I always get them now which is how I know how much they have changed this last few years. After being relatively stable for many years and coinciding with ET diagnosis. Things are not always as simple as gps would like to think if you are stable and in range and feel well that's good. But then things could change and that shows when your blood results show changes. But them they say you are still in range so no action. So frustrating and sad because its your life that's being affected not theirs.
I have ET and I have hypothyroidism since I was 13. I am 48 now.
Thats very interesting isn't it. So many people who have hypothyroidism and go on to develope an MPN . Do you feel well ?
jodary,I’ve had ET since 2004. My oncologist included a thyroid test with my normal blood screening in January 2021. It showed hypothyroidism. I went to the VA and they tested for it too. My VA PCP prescribed 50mcg of Levo thyroxine which I started February 1. I immediately started felling better. VA PCP settled on 75mcg which is my current dose. I doubled up on B12 and my recent blood screening shows some improvement in RBC, Hemoglobin and other counts. My platelets have been in the normal range since 2011.
Reading the hypothyroidism symptoms, I learned I had 7 or 8 of the symptoms. All in all, I feel better now then before taking Levo thyroxine.
Take care and good luck to you….Bippers
Have you been on treatment for ET to get platelets into normal range ?
I was on a 500mg Hydroxuria from 2004 till 2012. Platelet count went from about 800 down to 350 or so now. My only issue with hydroxuria was it clouded my thinking. And, I was a software developer/ analyst. That cleared up during the first six months after stopping the drug. I didn’t realize the affect on my thinking until it started to wear off.
Bippers
Can I ask why you stopped it and what you take now ? I
My oncologist decided I didn’t need the hydroxuria when my platelet count went into the normal range. I take a monthly 1000mcg B12 shot and daily 2000mcg B12 orally.
My cardiologist prescribed Eliquis for a blood thinner so I don’t take a daily aspirin.
So far so good.
Hi! The only issue I have is that I am tired a lot.
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