Hashimoto's /Graves combo

[Gazebo]

Thyroid tests carried out by GP indicated I was in the 'normal' range and I was advised to continue taking Thyroxine as before. Knew within myself that something was far amiss so arranged for tests to be carried out privately and the results indicate that I have a combination of Hashimoto's and Graves. Took the results to GP who checked with the hospital biolab who said to go with previous results and continue with Thyroxine - which I find totally unacceptable but, putting that aside, am left wondering how it would be possible to treat a combination of two extremes since there are times during the day when I am chronically fatigued (hypo) but, later can find myself overheating (hyper) so am wondering how the two can be treated at the same time. Are there others with a similar diagnosis and, if so, what kind of treatment (s) do you receive and, with what level of success?

[startagaingirl]

Hi - Many symptoms are common to both hypo and hyper and hence confusion can arise. Before members can give specific advice you really would need to post some blood results with ranges (the numbers in brackets). Do you have copies of your blood tests? If not then ask your GPs receptionist for them. I would think it is highly unlikely you have both, rather that there has been a mis-interpretation of your results, which wouldn't be unusual by the way. x

[Silver_Fairy in reply to startagaingirl]

I have both.

[Gazebo in reply to Silver_Fairy]

Thanks for response. Sorry that you have this but it is reassuring for me to know that others have this combination. Wondering how you are being treated and if you have noticed any improvements?

[Silver_Fairy in reply to Gazebo]

I don't think I will be of any help I'm afraid. Diagnosed with Graves, antithyroid meds for about 4yrs then went into remission.

My levels then started dropping and I was suffering hypo symptoms (I knew they were hypo as I had been overmedicated on Carb!). They weren't out of range but I asked GP for a trial of Levo (she admitted not knowing much about the thyroid and I think I persuaded her through my research) I also asked for Hashi antibodies to be checked. This was refused so I got them done myself when I moved to Italy last year. They came back positive which explains the drop in levels (I don't think my thyroid has enough oompf anymore to swing hyper!)

So now I am self medicating as my Italian is not good enough to explain all that to a doctor. But at least I can just go to a clinic and get whatever tests done that I need and for a lower price than online.

[Silver_Fairy in reply to Silver_Fairy]

Also meant to say, I obviously still have Graves antibodies and who knows when I first had Hashi?

[Gazebo in reply to startagaingirl]

Hi Startagaingirl,

Thanks for your reply.

As explained in previous post, the GP carried out the standard tests and I got the standard response that I fell within the normal category so just to continue taking the Thyroxine. I found this unsatisfactory as T3 level was not tested for etc sohad the tests done privately. It was the private test that not only confirmed that I have Hashimoto's - which incidentally runs in the family - but also have Graves. The feedback / interpretation was made by a medically qualified doctor so I see no reason to doubt things -especially as having Graves would serve to explain why I keep on overheating - something that is not normally associated with hypothyroidism or Hashimoto's.

I also have other autoimmune conditions and see a neurologist regularly. I showed him the test results and explained what was happening and, having seen them, he decided to refer me to an Endocrinologist for further follow up so he too seems to give credence to the interpretation supplied with the results.

Someone mentioned that, although it is fairly rare for someone to have symptoms of both, they remembered seeing other forum members with similar issues and that it might be an idea to create a post raising the issue - which is what I have done. It looks like they were correct as there have been a couple of responses indicating that others have had this combination so it's nice to know I'm not alone 😊

[debbymcc60]

Hello Gazebo, I had high Hashi antibodies and Graves antibodies over the course of 15 years.. Predominantly, my thyroid was overactive, doctors were prompt and concerned about toxicosis ( in my case T3 toxicosis) and basically yawned at me when it was under active.

With just the awesome TSH criteria, I went from undetectable (panic prescription of Carbimazole and Endo referral) to it being over 10 within about 5 weeks. For me as soon as it went over about 2 I felt awful. Felt awful and was told my symptoms were Somatoform Disorder ( in my head).

The problem is called Hashitoxicosis. It's comp!ex to manage, and little understood by GP, and even Endocrinology. I was given antithyroid medication because of Graves, but quickly felt like a slug. For years I worked full time fitting hospital appointments around my day off. I would have blood tests and then a message left via voicemail to either increase, reduce or stay on the same dose. I developed throat pain and Endless shoulder impingement problems. Using my arms hurt my throat. I didn't experience this at all during the Graves; it turned out to be a Hashi type goitre.

The Graves overwhelmed me again in October, because my daughter suddenly died. I was back on Carbimazole, and had a total Thyroidectomy on March 1st. Now reliant on Levothyroxine.

This is just my experience. But wanted to let you know that yes, you can have both. This forum has so many experienced members with a wealth of knowledge and support.

[Gazebo in reply to debbymcc60]

Thanks for your reply. It was very helpful and confirmed my suspicion that it might be very difficult to get the balance right between the 2 extremes. Had thyrotoxicosis about 40 years ago. It was treated with Carbimazole and cleared up completely. I was free of thyroid issues. It then returned masquerading as hypothyroidism - subsequently discovered to be Hashimoto's & Graves. Ah, the joys!

Wondering if the operation helped - eg. whether you find Thyroxine (T4) supplementation sufficient on its own given that it sometimes fails to stimulate T3 etc?

So sorry to hear about your daughter. It must have come as a terrible shock.

Thanks again for all your help.

[debbymcc60 in reply to Gazebo]

Its a bit soon to judge as still recovering from incision. My parathyroid glands were damaged, that caused critically low calcium post op. The histology found some parathyroid tissue

Obviously enough was left because my calcium is normal now. ( and parathyroid hormone) I'm on 125 mg Levo. My experience of hypo symptoms being ignored, and because of other people's experience, I have bought some NDT iv haven't taken any because got Endocrinologist follow up later this month and I wanted to just take what NHS prescribe for now. Going Gluten and dairy free helped with autoimmune flares.

I didn't take this option lightly, it's a major operation. But I declined Radioactive iodine when I relapsed in 2010.

Yes a terrible shock to lose my beautiful daughter. Every day without her is excruciating.

I hope you get the help you need, most importantly an educated Dr .. iv stopped being shocked by the level of ignorance and misogyny. Don't be treated like you are stupid or fobbed off

[Gazebo in reply to debbymcc60]

Thanks Debby.

I understand what you mean by being fobbed off. I initially received my thyroid results from a duty GP. I was shocked to learn that I fell in the normal range and, when I queried whether the T3 had been tested, the duty GP repeatedly body - swerved the question -insisting my thyroid was 'fine' -hence the reason why I paid for the tests to be done privately. When those results came in they indicated that my TSH and T4 was in the normal range - which was in accord with the findings of the tests run by the GP -but the additional tests indicated Hashimoto's /Graves. I sent a copy of this to my GP and she consulted with the biolab of the local hospital who advised to go with their results and continue the meds as before - totally ignoring the other results. I was left reeling but, as chance would have it, I go into hospital every 4 weeks for immunoglobulin therapy for an extremely rare auto-immune / neurological condition and am under a neurologist. I requested to see him when I was in and he offered to refer me to an endocrinologist. I took up the offer but I suspect, going from the experiences of others, that it is likely to be a pointless exercise.

Thanks again for your input. It is greatly appreciated.

Would be interested in hearing how you get on further down the line.

All the best! 😊

[elaine2447]

May I ask which tests you had to confirm Graves and Hashimotos. I am sure that is my problem too but the antibodies test I had done with Medicheck I think was just peroxidase which were extremely high and the thyroglobulin just over. Thanks.

[Gazebo]

It was the 'Thyroid Check Plus' I requested. Did you ask for the commentary option since it was the raised TPA level that prompted the comment about Hashimoto's and Graves etc?