ET and Hypothyroidism

[jodary]

Hi

Does anyone with ET also have hypothyroidism. I have been hypothyroid for over 30 years. Diagnosed with ET for about 9 years and only took aspirin until about 3 years ago when I started on a low dose of hydroxycarbomide. Recently my thyroid blood tests show increasing tsh and t4 dropping now to about half of what it was a year ago and towards the bottom of the range resulting in hypothyroid symptons returning. I have researched online and can find some mention of a connection between raised platelets and hypothyroidism but my haemo shows little interest. I have battled with my GP over the years as thyroid issues are dismissed and as long as you are in range it doesn't matter to them if you drop from top end of range to bottom end and symptons are not taken seriously. It will be interesting to see if I increase my thyroid medication whether it will have any affect on my platelets which are refusing to budge . Just wondered if anyone else has both. The thyroid can affect every part of your body .

[RomaJG]

Hi jodary , I do. I was diagnosed with ET at the beginning of last year, about a month after I was diagnosed with thyroid problems. My ET diagnosis was made after blood tests for my thyroid showed that my platelets were increased. As part of the investigation into why my platelets were going up, I had an ultrasound which showed I have Hashimoto’s Thyroiditis.

[jodary in reply to RomaJG]

Thats interesting. Are you on thyroxine ? If so did your platelets react at all when you started it? My t4 has halved from over 20 to now 12.8 the lowest I've ever had. And my plateletshave now stuck in 700s despite the HU. So I have increased my thyroxine and am interested to see if platelets change. It just seems strange, my t4 has always been high end of range now it's dropped to the bottom. Unless the HU is having some effect on it. I am going to do more research.

[RomaJG in reply to jodary]

Hi jodary , I’m on thyroxine which has brought be into normal T4 level, but it’s not impacted my platelets which continued to rise. I’m Calr as well. No idea whether the thyroid is what triggered the ET manifestation.

[ChillyAsh34 in reply to jodary]

I have a thyroid problem it was a try blood test that picked but abnormal for me been on thyroxine 30 yrs I was only diagnosed last Thursday so new to me so don't know impact yet on my ET

[SoledadBarcelona]

I am following this important issue for us. I am Hashimoto's disease and ET and when I have under control my thyroides, my blood conts are good and opposite. There are a few articles about this relationship for this reason I am looking for information desesperatly to talk to my hemo who is not interested in this. Thanks

[jodary in reply to SoledadBarcelona]

Yes they won't listen. I My thyroid issues aren't under control and inmy opinion as the thyroid has an effect on every part of your body then it needs to be taken seriously. But I don't understand why my t4 has plummeted . X

[SoledadBarcelona]

Maybe your diet, exercise, habit in your life, stress conditions, your cromosomes are not working well, etc. Check your life and find the cause. Maybe you need Levotiroxina, etc a lot of causes. X

[Doggy1903]

Good morning. Yes i too have hypothyroidism and ET. Please do keep in contact. There seems to be an interesting link also with B12, which I have injections for. Auto immune systems seem to have all gone astray!!Take care and will be good to discuss how you are and our treatment plans.

[Mustang50]

I too have a thyroid problem and would be very interested in any findings as my Gp and haematologist aren’t interested.

[jodary in reply to Mustang50]

Have you had the thyroid problem for a long time and were you stable on your medication? I'm waiting to see if an increase in thyroxine will have any impact on my platelets. I have never has such a low t4 before. It gets confusing as I don't know now if hydroxy can affect it or is it because my thyroid has become more underactive. And if it has has that increased my platelets. As you said the gp and haematologist won't listen.

[Mustang50 in reply to jodary]

No never been stable I thought once diagnosed with ET and PV and on Pegasys, this was the answer to all my symptoms but still struggling with them some days other days feel fine 🤷‍♀️

[jodary in reply to Mustang50]

Same here but on the days I don't feel so good is it the ET the hydroxy or the hypothyroidism. Its so confusing.. unfortunately the gp and haematologist won't consider that there could be a connection.

[hunter5582 in reply to jodary]

Of course there can be a connection between having two medical conditions with overlapping symptoms and taking a medication that also can have adverse effects like asthenia and dyspnea. Any one of these three things can make you feel lousy sometimes. Suggest that it is time for a second opinion (from a MPN Specialist). Perhaps time for a new hematologist and a new GP. if they won't listen to your concerns.

[Mustang50]

Think this is where we need the help of a MPN specialist but my Gp won’t refer me and just went over the haematologist head wasn’t even interested in talking about it, the days I feel rubbish I feel like I have hit a brick wall on the good days to could do anything.

[hunter5582 in reply to Mustang50]

The lack of concern for significant symptoms that diminish your quality of life is not acceptable medical care. Physician unwillingness to facilitate access to appropriate medical care from a MPN Specialist is unacceptable. Unacceptable medical care can only continue when it is tolerated. Assertive patients receive higher quality care. Passive patients do not.

We all have to become our own best advocates in whatever healthcare system we are in. Part of it is knowing how to work the system. Part of it is unwavering persistence. Sometimes, part of it is knowing when to complain formally and go over the head of the physicians providing your care. These providers can be replaced when needed. This is your choice and your right as a patient.

There is no reason to feel like rubbish and hit a brick wall in dealing with it. Find a door in the wall or climb the wall. Smash the wall if you must. Winston Churchill said "Never surrender." This applies to accessing the care we need too. It is not your GPs choice about whether you need to seek care from a MPN Specialist. This is your decision. Your GP can either facilitate your access to appropriate MPN care or be replaced.

I hope you arrange for the care you deserve ASAP.

[Mustang50]

Thanks so much for that Hunter, I run my own business and was a single Mum for a number of years so have learnt to stand up for my self but this is all relatively new to me and getting to know how the system works, so I’m truly grateful for your advice to know when to push forward and because it’s all new wasn’t sure weather the Symptoms were something I had got to accept with the condition, I had taken your previous advice and asked to be referred so I now know I can keep pushing!!! Thank you so much!!!

[hunter5582 in reply to Mustang50]

One avenue some in the NHS have made reference to is contacting the MPN Specialist directly and getting an agreement to see you. Then go back to the GP with the agreement in place. Seems to work for some in the system. Wishing you success in the near future.

[Mustang50 in reply to hunter5582]

Thanks great advice!

[SRH55]

Hi Jodary,

I have had ET, since 2009 & now MPL positive, I am taking pegasys (a low dose).

I have had an under active thyroid since 1995 & have never thought about there being any connection, so it was interesting to read what you’ve said.

My platelets are well controlled but my wbc, neutrophils & haemaglobin levels are low, so now undergoing further tests.

Best wishes,

Shirley

[jodary in reply to SRH55]

I have increased my thyroxine and am interested to see if it makes any difference. Its puzzling as to why my T4 is steadily decreasing and is at an all time low for me and is now giving me hypothyroid symptoms. There seems to be quite a few of us suffering from both issues, but whether they are connected is hard to prove. If my platelets do change following my thyroxine increase it will be interesting.

[SRH55 in reply to jodary]

My thyroid levels are good at the moment, I hope you manage to get things sorted.

[Cookiebaker]

I too have ET(mpl) mutation and hypothyroid. I am taking Synthroid but having trouble getting to the right dose. I take Hydroxyurea for ET. I am 72 .

[jodary in reply to Cookiebaker]

Hi. Which came first ET or Hypothyroid ? My thyroid levels have dropped considerably lately but I don't know why. . I am also taking hydroxy. I was diagnosed hypothyroid over 30 years ago but have only been on hydroxy for 2 years although I was diagnosed ET 9 years ago.

[Cookiebaker in reply to jodary]

I have had high platelets for 7years . I started Hydroxyurea 2 1/2 years ago.,,Just diagnosed hypothyroidism in January 2021.

[jodary in reply to Cookiebaker]

Interesting but still hard to say if there might be a connection . I suppose they would say hypothyroidism is common.although they seem to consider it not to be an important condition to have. It can cause a lot of symptoms yet as long as its within their range they say its fine.Even if its dropped ftom top of range to bottom. X