Just a quick question

[Nettie22]

Hope everyone is keeping well 😊 it has been a while since I have posted.

Does anyone else have a MPN and an under active thyroid?? I would be really grateful to hear from anyone .

I will give an update on my busy and confusing year to soon.

Nettie xxx

[Diamond-kitty]

Hi Nettie

I have been wondering how everything was going.

From what I’ve read it does go together quite a bit.

Does this mean you have a diagnosis now.

Good Luck

[Nettie22 in reply to Diamond-kitty]

Hi Karen hope your keeping well. I'm still going through a load of tests following the Last mini stroke to find out what's causing them. Basically they have now said I have an under active thyroid but still a question mark over that. Still know idea on what mpn it is I have got narrowed it down to ET or MF lol but definitely MPL mutation, so far since June I have had been up the hospital at least 10 times and another 4 appointments left to go and that's just to do with the stroke. Anyway I'm waffling but thank you for your reply. I message you soon when I have a better idea what's going on.

Take care nettie xx

[Superwoman]

Hi Nettie,

I have ET also an under active Thyroid, and take thyroxin, had for many years think it was the start of my journey towards my MPN diagnosis, body had not been functioning properly for years, heart problems and general ill health, I have always wondered if the two are related or go hand in hand, have asked my Haematologist, and he felt that it might not of helped, but would not say yes or no.

But once on Hydroxycarbamide my health improved, plus changes to my diet and a lot more exercise has helped, not only are my readings for my ET all in the normal range so are my Thyroid readings.

Jean

[Nettie22 in reply to Superwoman]

Thank you Jean, I'm into my third month on hydroxycarbamide and starting to feel better.

Nettie xx

[Superwoman in reply to Nettie22]

That’s good to hear.

Jean x

[Kari1961]

Hi Nettie

I have PV and I had Hyperparathyroidism until November last year when they removed one of my parathyroid glands. I'm hoping that the three remaining will continue to behave.

Kari

[Nettie22 in reply to Kari1961]

I will keep my fingers crossed that they behave for you, thank you for your reply

Nettie xx

[Anag]

Dear Nettie!

I have Hashimoto. Have had it for years. I have had this for about 35 years and the doctors never checked properly and said, let’s keep an eye on it. I lived in Canada, England, 2 cities in Germany and then in Austria. I want to kick them all. I eventually was put on the highest level Thyrex and Euthyrox for 20 years. Yes, this was the reason for many problems in my life and probably one of the reasons I have ET. I have studied this a lot and here is what I know.

Firstly, have the doctor check your T3, T4, TSH and the antibodies that are associated with auto immune Thyroiditis in your blood test! He must check the AB no matter what, else you will never have a proper diagnosis. It is imperative to check with a blood test 4-6 weeks later again to catch the hormone swings caused by Hashimoto thyroiditis. Most doctors don’t do this.

If you indeed have an under active thyroid, the next step is not medication!!! Please. Doctors dish out meds to fight symptoms only and check you off their list.

Check to make sure Vit. D is between 60-80 and that you don’t have a selenium or iodine deficiency. Once those are fixed, your thyroid might be able to repair itself. You must get the root cause of the sluggish thyroid, which is responsible for your general health in 400 ways. If you have amalgams or eat a lot of big mouth fish, you are probably mercury poisoned, like me. Mercury loves the thyroid and sticks to it. The immune system then goes to this region and tries to kill the mercury, while destroying parts of your thyroid! This is the AutoImmune thyroiditis. Through this, you develop lesions. It’s not the body attacking the thyroid, it’s your body trying to protect your thyroid from invaders. You must find the cause and not medicate the symptoms, else the next autoimmune disease will be around the corner.

Next step is a thyroid ultra sound to see what’s going on in there.

At therapy onset for Hashimoto, my thyroid was almost completely destroyed. The high med levels that were given me put my thyroid to sleep, to keep the anti-bodies down. After my ET diagnosis, I changed to all natural everything in my life and then changed from the synthetic thyroid hormone to bioidentical from pig. I’ve also removed half my amalgams over 8 months and am due for 2 more removal in 3 weeks. Should be done by January. This is a tough procedure that can hurt the body and must be done carefully by a dentist that knows what they are doing.

Through the bioidentical hormone, I have been able to fix my thyroid to a certain extent. I now take 1/2 the thyroid hormone in comparison to a year ago! Great joy. My thyroid has started doing its job again. It will probably never completely recover, since it lost so much mass, but I’m so much better off and this helps my general health in every way. I just feel better in every way and my ET has not gotten worse.

I wish you all the best! 🙂 Anag

[katiewalsh in reply to Anag]

Hi. If you’ve read my post you’ll see I have some similarities. Can you tell me where I can read about what you wrote? Thx. Katie

[Nettie22]

Thank you for your reply I didn't realise it could be so complicated. I have been borderline for about 17 + years . Now they are saying it could be underactive the stroke department will be doing further test at next appointment. I hope you continue feeling better .😁

Nettie xx

[ChelseaF]

Hashimoto’s and ET here. It makes the fatigue hard to pin down and I’m still balancing meds. Exercise and diet are really important for me, too.

[katiewalsh]

Hi Nettie, I too have Hashimotos disease. I was told it’s an autoimmune disease where your body (white blood cells) thinks your thyroid gland is bad & attacks it, gradually eliminating it. I was diagnosed with that probably around 30 years ago. Was diagnosed with MPN around 5-6 years ago. I had never heard before what Anag reports. I was put on a synthetic replacement for my lack of thyroid. But I too have a lot of fillings. Best of luck to you. Katie

[Mal42]

Hi. I have PV, diagnosed 4 years ago and hypothyroid diagnosed 25 years ago, since then I have had me/cfs and have felt hypthyroid an issue but it hasn't been taken seriously. My ft3 is low to under range, tsh varies as i change thyroxine amounts. My ferratin is mostly low and I am not allowed to do anything about that because of PV, and yes I am still knackered most of the time.

I have found there is a feratin, thyroid link and would like to take info to doc if anybody has anything, not that it will make any difference, I am very disillusioned with my treatment at the moment and feel very alone.

Thank you

Mal

[Nettie22]

Thank you for your reply, I'm sorry you feel that way. I'm waiting for further tests and results at the moment. I was originally told I had PV that was 2 years ago . Now my consultant is saying ET or MF because I have the MPL mutation so I am waiting for a BMB.

Everyone on here knows the pitfalls of our condition . So please don't feel alone keep posting and I'm sure the wonderful people on here will be able to help in some way even if it is a kind word. Maybe a change of doctor will help.

Nettie x