I'm curious if anyone has developed hypothyroidism since starting treatment with hydroxycarbamide. I'm about to have a blood test to check this, but I have gained some weight and feel tired a lot .
Incidentally, I saw my haemo today . He's happy with the platelet count (now 284,000) . I quizzed him about the weight gain since Jan 2021 .. hence the blood test order. I'll see him again in 3 months.
Keep well everyone.
Hi I have an under active thyroid and take Thyroxin daily, I have been taking it long before I went on Hydroxycarbamide for my ET which was back in 2013 had a lot of weight gain and fatigue and a lot of infections, thats how it was found, was able to control the weight gain by diet and exercise, but once I went on Hydroxycarbamide in 2013 the weight slowly went back on again, which my Haematologist says is the Hydroxy, so get weighed when I go for my bloods every four months to see how much weight I have gained and again watch what I eat and exercise daily which helps, think I may of had ET years before but was not diagnosed but the systems are very much the same as having an under active Thyroid.Unfortunately Thyroid problems and an MPN can go together think you will find on here quite a few people that have thyroid problems before they got diagnosed with an MPN, also be aware thyroid problems can cause your cholesterol to rise as well hence its good to watch your diet, drink plenty of water and take a good amount of exercise.
These days all my bloods are all in the normal range including my Thyroid, just got over a nasty UTI infection and that was found through the Haematology dept first infection in a very long time.
Hope this helps
Jean
Thank you Jean . This is very helpful. I also had ET for many years before the lumbar puncture and 'official' diagnosis. Seems that no action is taken until platelets reach a certain level. Yesterday my haemo told me that most of his clients experience weight loss on hydroxycarbamide, not weight gain. I guess some of us draw the short straw.I'll be keen to see the results of the blood test for thyroid. Cheers for now and keep well.
I gained a small amount of weight on HU ( `2 lbs) . It seems to be slowly going away since switch to Besremi. My bloods and last thyroid are all ok. You can see other posts here that weight gain on HU is common. This link has been posted on the point:
pubmed.ncbi.nlm.nih.gov/917...
<<At 18 months, the hydroxyurea-treated subjects exhibited an average weight gain of 3.16 kg (vs 1.82 for non-HU subjects)>>
Thanks EPguy. Good for you that you were able to switch to Besremi and have seen results.I've seen that article you mentioned. My specialist commented that most people lose weight rather than gain, which is cold comfort for me.
Still I'll pursue with my plan of elimination. Once the Propranolol is out of my system and I have "Dukaned" for at least a month, the culprit should be revealed. I do hope it's not the Hydra.
Keep well and cheers!
In my case, adding weight is not a top concern, I actually tend toward wiry and was wasting away after Covid Mar '20 so I fear weight loss more than gain these days. But the HU did add it in the wrong places.
I see from your earlier posts you've read up on INF. Is PEG or Besremi available to you?
I'm not sure if these are. But if I hit a brick wall, I will pursue an alternative drug if there is one available. Unfortunately this won't happen before 3 months has elapsed. I have another appt. with my haemo then. I'll focus on plan a in the interim. Thanks for your contribution and concern 😀.
Weight gain is a known side effect of HU, though not all experience it. It may have nothing to do with thyroid function. mayoclinic.org/drugs-supple...
pubmed.ncbi.nlm.nih.gov/917...
rxlist.com/hydrea-side-effe...
online.epocrates.com/drugs/...
It makes sense to check thyroid function, but do not be surprised if results are normal. it may just be a HU side effect.
I tend to agree with you hunter5582. I've had my throid checked last year. Perhaps the haemo was just placating me ordering this blood test. Thanks too for the links.
Just a query, hunter5582... from your experience, have you heard of any anti-platelets drugs that do not cause weight gain, or is it a case of trial and error to find one?
There are cytoreductive medications that do not cause weight gain. These include the interferons (Pegasys and Besremi). My understanding is that anagrelide and Jakafi (ruxolitinib) can also cause weight gain.
There is some trial and error involved. We never really know how any one of us will respond to the treatment options until we try. The interferons are what is considered to be the other first-line treatment for ET. It would be up to you to review the risk/benefit analysis for this option and discuss with your doc if you feel it is in your best interests.
All the best.
Hi hunter
I know you’re pretty knowledgeable so I’ll ask you a question here regarding HU and thyroid / thyroid medication if you don’t mind.
Since being on HU for several years at 500mg daily my thyroid results remained very much the same as always. However over the last year or so I’ve had to increase the liothyronine dose and reduce Levi thyroxine dose to keep my results at the same level.
Last year i had 3 dose increases and had to increase my liothyronine. Now I’ve had my HU reduced by 1 tablet a week . I’ve since been losing some of the weight I’d pot on since starting hu.( was ok 500 min to Thursday 1000 on Friday Saturday & Sunday. It’s now reduced to 500 mon- fri. I haven’t had a thyroid test since reducing but as I say I’ve lost a bit of weight .
My problem now is that I’ve started getting hot flushes and now wondering if by reducing the hi I’ve now become slightly over medicated with my thyroid meds.
What’s your thoughts on this? Hope you don’t mind me asking you.
Ps: I’ve also now got numbness in my feet lower legs hands and lower arms. These areas used to tingle for many years but don’t anymore just a numb sensation
I too have been on Thyroxin for many years, as my ET jak2 was diagnosed last year, now on hydroxy too. All bloods just been done, including thyroid (dose was adjusted and dropped slightly) and have been told now in normal range for thyroid. Other blood results all good and platelets down to 358. They were 550 when I started Hydroxy in August last year. Thyroid issues certainly can cause weight gain, fatigue and sweats, so hopefully you can get this checked out and correctly prescribed. Hope it all works out well for you.
I have had thyroid under activity for 30 yrs my ET jak 2 was discovered in a routine blood test for my thyroid ,I take hydroxycarbamide ,and aspirin and no problems at moment
I have hypothyroidism too and take thyroxine daily. As I have now had an MPN for 28 years (initially ET and now MF) it is hard to know what has caused it. The important thing is to keep it under control I guess. As for weight gain I suddenly started to put on weight this year for no apparent reason then I realised I now have diarrhoea largely under control so food is not going straight through me so much. It’s a never ending puzzle of cause and effect isn’t it! Best wishes Jan
hi Bobby, I too have been experiencing weight gain after going on HU (a year ago) and had thyroid function checked : all normal. My weight went up by 3kg but now seems to have stabilised. I exercise and eat healthily and am looking at switching to Pegasys later on in the year, in consideration of the long term (HU is so far working well for me). Good luck
I have gained over 25 pounds since starting HU . That was 3 years ago and was diagnosed with hypo thyroid last year. Have been taking Synthroid but haven’t lost any weight. It is depressing not to fit into my clothes,
Hi, I have been on HU since last July. Lost a small amount of wt early on but recently have gained about 5 lbs over the last 2 months. My thyroid blood tests are all normal. Everyone is different in how we react to meds. Best to you.
Many thanks to all who have contributed to my post/query. The community here is always keen to help with my issues. Unfortunately I won't see my haemo for 3 months so I'll explore my other suspect medication (Propranolol) as to the likelihood it causes weight gain. I will keep you informed of the progress. Lastly, thanks hunter5582 for the tips re meds.All the best to you
😀
You are correct that Propranolol can cause weight gain. You may be getting a double whammy. Hope you get it all sorted ASAP.
Thanks hunter5582. I'm very grateful that I keep records, as I noted that I had a significant weight loss for over 3 months last year when I was on the Hydrea + Topamax . At the time I had no idea about the drug called Topamax, but I recently discovered that it causes weight loss. You can bet I'll be seeing my GP for another script of Topamax. Goodness knows why I went off it...perhaps it wasn't helping too much with my hypnic headaches....but that's another story 😚
Hypothyroidism. Must check T4, T3, TSH and TPO antibodies!! If negative, test again in 4-6 weeks again to be sure because the most common hypoth. is Hashimoto and this goes up and down in cycles.
To cure Hashimoto (yes there’s a cure if the problem hasn’t been around to long!) you must make sure you have enough iodine, Selenium, Vit D (levels from 50-80 are ideal-under 50 show a deficit even if the acceptable range is 20-100!).
Another culprite is mercury and also gluten.
After 20 years of highest dosed T4 (200mcg daily) for my disastrous thyroid problems, I manged to reduce my intake to 90mcg and my thyroid grew 50+ (measured). I’m living proof. 🙂
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