Is my husband going hypo?

[Kari55]

My husband was diagnosed with Graves’ disease in February and is currently on 150mg PTU. Last week he noticed a slide in energy and yesterday he spent all evening half asleep on the sofa. He has started getting headaches and brain fog. His pulse last night was 55. He also struggled to warm up but then yesterday was a very cold day. Are these potential signs of going hypo? Should he stop his medication or reduce the dose?

[Kari55]

We are not aware of him having Hashimoto. He definitely had high Graves antibodies. The other option is that his white cells are dropping as this has happened before on Carbimazole.

[Kari55]

Thank you. He is going for a blood test tomorrow and seeing his endo on Friday. She ruled out RAI as my husband has TED and his ophthalmologist advised against it. She insists on seeing him every 4 weeks whereas he feels the gaps are too long.

[shaws Administrator in reply to Kari55]

I am not sure if you know that the recommendation is that blood tests for thyroid hormones have to be at the very earliest as TSH is highest then and is the main way doctors diagnose. TSH drops throughout the day. It is from the pituitary gland and rises when thyroid gland is struggling. Don't eat or take thyroid hormone replacements before test as results can be skewed. Food can lower result but you can drink water.

[Kari55 in reply to shaws]

Thanks shaws, we were not aware of this at all.

[shaws Administrator in reply to Kari55]

We've found this method best and may prevent a doctor reducing dose when that's the last thing we want. It is a patient-to-patient advice.

[Valarian in reply to shaws]

Kari55’s husband is on PTU, not thyroid replacement. From her description, it sounds like he probably needs his dose reduced.

Hopefully, given that he is being treated for Graves’, the endo will focus on FT3 and FT4 as much as TSH.

[Pensweetie]

Hi

I was diagnosed with likely Graves in Sept last year. I've been following your posts and your husbands progress. I'm still on 10mg of Carbimazole per day. At last count my bloods were T4 15 (9-24) and TSH 0.02 (.34 - 5.4). The endo suggests staying on this dose until T4 comes down further and/or TSH goes conviningly up.

I tried the auto imune protocol but didn't stick with it. I wonder how your husband got on? I very quickly got concerned about lack of nutrients, weight loss and particulaly lack of calcuim in the diet and it was so restictive to feel positively unhealthy. I am back on a normal diet now and I'm feeling pretty good. I had a ski touring holiday and managed to keep up with other folk so I can't really complain. I've also been cycling quite a bit and feeling reasonably fit.

I'm no expert but if I were you I'd be considering whether I was going hypo with the symptoms you've described. I guess that could mean he's starting to go into remission and can reduce the dose - which would be good news indeed. That said, I've often been wrong with my homespun diagnoses so you really have to get it checked out asap.

I get another blood test in a couple of weeks which will determine what happens next with my meds.

Penny

[Kari55 in reply to Pensweetie]

Thank you Penny. I do hope that he is going into remission and needs a lower dose. Yes, he is sticking to the AIP so far. He is diary intolerant so has not eaten diary in years but his calcium seems to be high according to the blood tests. It’s lovely to hear that you are doing well 🙂 My husband has a blood test and endo visit this Friday so we should get an indication on where things are going.

[Pensweetie in reply to Kari55]

I'll look forward to hearing how you get on. Its good to follow other people with Graves as most of the forum seems to be about Hashimoto.

Penny

[Pensweetie]

Pretty sure - and glad you think my Graves is not serious. It felt so before diagnosis when my heart rate went up to 130 resting. It was 66 this morning which is more the normal 'me'. I'm basically taking the advice of the endo and doc (who mainly agree) with a reasonable dose of scepticism and my own undertanding mixed in.

Why would you think it could be Hashimoto? I've never been hypo.....???

I did wonder if the dentist prescribed extra strength flouride toothpast that I started on a month or two before the Graves diagnisis might have been the culprit. I only twigged that a day or two ago as a result of a post here .... so I've come off that although it will take time to see if it helps at all.

[Valarian in reply to Pensweetie]

All untreated Graves’ is potentially serious, and although you’re only on 10mg now (most people on titration eventually come down much lower than this), it sounds as though you started on a higher dose.

Do you know whether your antibodies were tested for Graves’ ? Also, when was your FT3 last tested ? This can remain high even when FT4 is within range, so they should be testing both. TSH can take a while to respond, even when thyroid levels are normal.

[Pensweetie in reply to Valarian]

Thanks Valarian. Yes, I started on 20mg in September and came down to 10mg in Jan. I have thyroid receptor antibodies tested when first diagnosed and it was 3.6 (0-1.9). I've never had FT3 tested. The doc says the Endo will ask for it if he thinks its needed - but he hasn't so far. I've been told that TSH can take a while to respond, but no one has told me how long 'a while' is!

Penny

[Valarian in reply to Pensweetie]

20mg is still a moderate dose. Many people with Graves’ start at double that. Your GP may not be able to order FT3 - in quite a few places, it seems only the endo can do this. Given the length of time it’s taking for TSH to come up (which may just be the way it is, but hey, it’s a good excuse...) you could ask your endo to test FT3.

[Pensweetie in reply to Valarian]

Thanks Valarian. I think I'll be called to see the endo in another few weeks so I'll ask then and see what he says.

[Rmichelle in reply to Pensweetie]

Hi im one of them people valarian mentioned-im on titration doses 2.5mgs and due to come down even further soon when ive seen endo, but ft3 is really important and really you need a full thyroid panel done. I started out intially in august on 20mgs and then 15, then 10 and so on. I have both graves and hashis-its a long long road.xx

[Pensweetie in reply to Rmichelle]

Thanks Rmichelle. I'll definately discuss FT3 test with the endo when I see him. For now I'm feeling good so just coasting until next appointment comes along.

[Rmichelle in reply to Pensweetie]

Yes-good luck.😊😊😊

[Kari55]

When he was diagnosed, his results were:

TSH receptor stimulating Ab 11.4 (0.82-3)

Thyroglobulin Ab 53 (0-115)

Thyroid Peroxidase Ab 67.2 (0-34)

Would any of these indicate Hashimoto?

[Valarian in reply to Kari55]

TRAb (TSH receptor stimulating antibodies) are very elevated, indicating Graves’. These antibodies mimic the action of TSH, leading to the hyperthyroidism seen in Graves’ patients.

TPO (Thyroid Peroxidase antibodies) are a more general autoimmune response,and found in 90% of people with Hashi’s, somewhere between 65-80% of people with Graves’, and sometimes in patients with other disorders too. The biggest concentrations of these antibodies are found in those with Hashi’s, and although I haven’t found reference ranges for Hashi’s v Graves’, anecdotally, I’m sure I’ve seen members with Hashi’s posting far bigger numbers for TPO than those you quoted for your husband.

mayoclinic.org/thyroid-dise...

thyroiduk.org.uk/tuk/about_...

The most common reason for people being treated for Graves ‘ to report hypO-type symptoms is that they’re thyroid levels are coming under control, and consequently they are a bit over-medicated with anti-thyroids. This is typically very easily resolved, and a way, a sign that the medication is working.

I

[Kari55 in reply to Valarian]

Thank you Valarian for this detailed explanation. Learning all the time!

[Valarian]

It does sound as if he has hypo symptoms. I think this is still a moderately high dose of PTU (I’m more familiar with Carbimazole), so hopefully he’s simply a bit over-medicated, and a reduction in dose will sort things out. Perversely, this could be good news - ie the thyroid levels are coming under control.

Given your husband’s previous history, if you’re ’re worried about white cell count, or the symptoms are similar to the last time he was affected by this, I would call the endos secretary and ask for advice. They may want the test brought forward,or extra tests run. Unless he has the sore throat or mouth ulcers that we are warned about, I wouldn’t stop the medication without taking advice - you don’t want thyroid levels to take off again.

[Kari55 in reply to Valarian]

Thanks Valarian. He is going tomorrow morning so they will ring him if the cells drop.

[Valarian in reply to Kari55]

One point to bear in mind Kari, is that he really doesn’t need stress, and you being stressed out is likely to rub off into him. This is a wonderful site, with lots of information - but for now, I would concentrate on hoping the antithyroids are doing their job, and try not to worry about the rest. When your husband goes for his appointment, you may have some extra questions you want to ask but other than that - he needs to eat well, sleep well, and not worry too much (all easier said than done !)

[Kari55 in reply to Valarian]

You are completely right, I can be a bit of a stress-head!

[Kari55]

Oh dear, the doctor hasn’t mentioned anything about Hashi. He will ask on Friday.

[humanbean]

Thyroglobulin antibodies (TgAb) can appear in both Graves and Hashi's. However, doctors assume that TgAb are only relevant in hyperthyroidism.

[Rmichelle]

Hi there Kari, i was just like hubby back in dec/jan time-pins and needles in my fingers and toes and face, freezing cold head to toes and really exhausted combined with iron def, i got my bloods done and then changed my dose to 5mgs then as endo wanted me to stay on 5-can you believe that!! I was hypo levels, you could try going to 5mgs now.xx😊😊 dont stress😨

[Kari55 in reply to Rmichelle]

Thanks Rmichelle. My husband takes PTU as had neutropenia after Carbimazole. He is on 150mg and decided to go down to 100mg. He is endo might not like it! Why endos don’t know how to treat people?! Are you feeling well now? X

[Rmichelle]

Yes sorry you did say he was on ptu, sorry he had neutropenia, some peeps do well on carbi but others have to change. Lol my endo said if i changed dose again on my own accord he would strike me off!!😠 i can probably do without him anyway. Im still symptomatic and some days a better but i know im needing to lower dose as i need my frees upper end and they insist on staying low end so im hoping lower dose will lift them. I felt great for 3 weeks and thought right i can get my backside back to work and then BANG-fell back again but im also very iron def so being referred to GI now as im celiac too. Its all good isnt it!! 😆

[Kari55 in reply to Rmichelle]

Gosh, that is a lot going on. My husband was off work for 4 weeks but now he manages to drag himself into the office. His condition is also affecting his fertility so we have to deal with the hurt as well. Are you gluten free? My husband is on AIP, I’m trying to follow it too but don’t want to eat as much meat so following Paleo.

[Rmichelle in reply to Kari55]

Fair play to him dragging himself in-i wish as i miss my job!! yes i am gf and soya free as i have celiac disease so have to be gluten free so havent made much of a difference to my thyroid really only with my celiac symptons and stomach probs. Xx