Diagnosed Graves due to hyperthyroidism around 2 1/2 years ago. Went on Methimazole and tampered off. Thyroid normal for a while and no meds just vitamins. Was feeling great. Then 4 months ago feeling bad my TSH went to 5.7 while off medication so I went to hypo! Was put on thyquidity now a 3.75 ml dose. Photo shows my recent labs and labs 2 months ago with TSH 3.56 and Free T4 .83 borderline low as if recent results. Have other labs such as glucose, cholesterol, hemoglobin all borderline high. Also RDW is borderline low and Basos borderline high.
So confused. Dr says I will be on medication for life most likely says I have classic thyroid disease.
I have been feeling joint pain, headaches and throat clearing. This was all gone and now returned. Working on diet with little to no gluten and dairy. In menopause and have the hot flashes too! Sleep is off. Working out on and off. It always helps when I workout regularly just finding the time and feeling up for it. I drink water all the time. Gave up coffee in November and only drink matcha or green tea.
Any input or thoughts on this would be appreciated! Really was hoping to stay off medication. Wish there was a natural way to improve thyroid!
Thank you!
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Kim327
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Kim It is possible that you were always hypo. Autoimmune thyroiditis is a type of hypothyroidism that starts with a phase that mimics hyperthyroidism. The only way to tell is to check if you had antibodies tested. TrAB antiques confirm hyper.
Yes, I definitely remember your reply and you were spot on! I actually told my husband about your reply when we first learned I was hypo 2 months ago. He recommended perhaps I change drs. I am not sure if that’s the right call since he seemed to take me off medication before when I went normal and said also said my labs are typical for thyroid disease. My concern is staying on medication forever. Would getting pass menopause change this? Also, I’m worried about cholesterol. Don’t want to take meds for that too! It is just so frustrating to feel good and then feel bad again all of a sudden. Thank you!
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Essential to regularly retest vitamin D, folate, ferritin and B12
I also have tested positive for high TSI, Trab and TPO does this mean u have both diseases? Does this mean I will have Graves’ disease for now but eventually I will have hashis for the rest of my life? I’m confused.
My only TPO check was last year June 2020. Test says <10 is normal and my reading was 462. Also in June 2020 thyroid receptor antibodies were tested. >0.8 is positive and my reading was >100. I have always been hyper but am I destined to be hypo?
No scan of thyroid ever. Diagnosed May 2020. Endo said thyroid is diffuse and smooth. My T3 has always been crazy high in relation to T4, at least 50% of T4 converts to T3. No investigations. I’ve been told block and replace is next option but no appt from hospital. My blood was T4 7.0 range 10-22
T3 6.4 range 2.0-6.0
I was on 150mg a day of PTU but have cut back to 75mg slowly. At those blood levels I lost all the skin off my feet and my heels were cracked with deep fissures. At those blood levels I was told to keep going on the 150mgs of PTU. If I had continued I was scared what would happen to me in the 4 weeks between blood tests so slowly titrated to 75mg. My T3 is always over so I am 99% certain I am hyper again. Interestingly though I am having headaches, my spine is aching like flu and I have terrible fatigue. The headache and fatigue I can understand. Ive has this spinal ache once before and again I was over on T3. 6.4 is the lowest I have ever managed to get my T3. What to do? Take the 150mgs and go hypo or do what I did and go slowly back to 75mgs and be hyper.
You previously had elevated TSI & TPOAb. This means you have both Graves & Hashimotos and your thyroid hormone levels (& symptoms) will be dictated by which ever antibodies are dominant.
When both autoimmune diseases present together it is usually Graves at the forefront before the thyroid gland eventually becomes fibrosed from Hashi antibodies but you can switch between the two conditions for many years. It is also possible that you also have some TBAb which are blocking antibodies and that will eventually cause atrophy of the gland.
Ideally it would be good to have a scan to see at what stage your thyroid gland is at, or at the very least testing of all thyroid antibodies. Otherwise it could be tricky to dose if antibodies were to start elevating again, as identifying over/under symptoms isn't always clear cut.
However, in this moment in time you are definately hypo and in need of a dose raise of thryoxine because your FT4 is under range. It would be useful to have FT3 tested as well.
A full elevaluation in your circumstance would need to include:
TPOAb
TGAb
TSAb
TRAb
I would also recommend asking your doctor to test iron & nutrient levels, and adopting an autoimmune diet protocol, ie gluten free, possibly dairy free, reduce sugars, etc.
Right now I am on 3.75ml of Thyquidity (levothyroxine) I am awaiting my dr appointment to see about medication change which will probably be raised to 4ml. I will definitely request these additional tests to find out what’s going on and get a clear picture.
Thank you so much for this great information. So very helpful and appreciated!
Hi. I am like Kim327. I thought 80% of people who had Graves have TPO antibodies but I did not understand that it meant we had Hashis as well as Graves. I have TSI, TRAB and TPO antibodies so do I have both diseases? I’m confused
Sorry you’re hanging such a difficult time as well! Hope you find something to help you! This illness is debilitating! Unfortunately most people don’t understand what we go through!
No people have no idea what we r going through. It’s such a mental and physical condition. I’m like you, love to workout and it’s gone. Not forever but for now. I’m still hyper. I’ll do blood today to double check. Did you feel better over or under? I’m sure neither is ideal
I definitely felt worse hyper. I also have been going through menopause and had explant surgery in November. Some say breast implants can cause autoimmune issues. I felt better once they were out with the brain fog, eye tearing and depression eased too. Hyperthyroidism was awful so I know all too well your struggles and I’m so sorry! I now learned to push in the workouts and change my diet. Whenever I do too much of a bad thing (gluten, processed foods, dairy, stop workouts and drink a few to many cocktails) I suffer. I don’t drink all the time just social events and we’ve had a lot of them this summer. Also, I think red wine is hard on me due to the sugar content, but who knows if that’s the case. I just found that since I’ve had wine a little more so lately I’ve started to feel bad. This could also be my numbers out of whack. I was feeling so good for a while too. I hope you get out of hyper. I know the heart palpitations, lack of sleep, headaches, throat clearing, aches and pains, anxiety and depression are real! Always thought I was dying. I’d think they are missing something. I hope you find out a way to get to feeling better. The right medication should help you get there! Best of luck and contact me any time if you Habsburg questions. I’ll do my best to help you!
Hi. I do think it’s trial and error with alcohol. I don’t drink but after I work so hard it’s nice to have something to enjoy seeing as there are no gluten or dairy. I actually think I have a kidney issue as I’ve been feeling off for a few days. I have a constant backache that won’t go and have lost more of my appetite and energy as the days go by. I’m sore everything will work out. Usually does. Menopause is a killer on the body as if hashis and Graves weren’t enough. Same. Message me if u would like a chat anytime.
Thank you! I have the same issues back pain that’s so weird by my kidney area left side. So frustrating! I always get my kidney function checked and I’ve had mri and cat scans too. Always good. It’s the hardest mentally because we just don’t know why all these aches and pains and discomfort! Hang in there and I’ll keep you in my prayers! Stay in touch! Hope all goes well today for you with your blood results!
I feel like we r twining. It’s weird. I’ve had a liver scare so it’s probably time for a kidney infection. Why not. New Zealand is in total lockdown so the timing is poor to say the least. I’m on PTU. I could t get on with Carbimazole at all. Message me anytime.
Yes, it means you have both Graves & Hashi. I know you have been through an awful lot and it can be terribly hard to dose.
There are also some more antibodies: TBAb (TSH receptor blocking antibodies), although they are rarely tested for, but because they block TSH from reaching the thyroid gland, both thryoid hormones and conversion abilities dramatically decrease: and TRAb’s (TSH receptor-blocking antibodies). When these get high with TSAb (TSH-receptor stimulating antibodies) it is possible for them to cancel each other out, leaving thyroid hormone bloods looking fine when behind the scenes this huge turmoil of immune response is going on, which could make you feel very unwell.
I have got this same. All started with Graves-Basedova and my TPO was very higher >2000 and TSH 0,001. After 3 years treatment by very good endocrinologist my blood test came to normal. For 6 years was all good and when stard Hashi. First my body couldn’t find hormones and working very hard to produce it enough and for year’s was broken and couldn’t worked at all.
60 years ago people die on this illness, now we have treatment.
Well, it reads as though your thyroid has burnt itself out as you now appear to be hypothyroid and a scan of your thyroid would be sensible to confirm this " guess " .
This can and does happen to people who are not treated with a thyroidectomy or RAI :
Ultimately we all end up on medication for life as our thyroids are unable to support us and are damaged and disabled by the onslaught of the AI thyroid disease, AT drugs, and wear and tear.
I'm sorry I can't see these results very well -
Do you have a reading of current TSI / TRAB antibodies ? Is there a T3 reading ?
Graves can wax and wane for many years but without a fully functioning thyroid your symptoms will not be seen as " life threatening " :
I hope you found the Elaine Moore Graves Foundation website helpful, especially as to the auto immune component of this AI disease which isn't really covered by most mainstream medics.
Thank you for your reply! I do not have the current antibodies or T3 on this round of blood tests. I am not sure why my doctor doesn’t just have me get those every go around. However, I am going to ask him to add them from this point forward. I had a sonogram of my thyroid when diagnosed Graves but that was literally to ensure I didn’t have a goiter or something. I have had scans of head and neck and always came back thyroid normal size. Nothing too recent though. Will check on this as well.
Thanks so much and yes, Elaine Moore Site has been helpful!!
Hi. I am just like you. I have high TSI, TPO and TRAB antibodies. I’m still hyper but I have been feeling whole spine ache, fatigue and loss of appetite these last few days along with headache. I feel for you. I’m sure that’s not what u need though. I would say get the antibody testing done. Then u will know
Hi there. Quick update. Turns out I have a urine infection and my leukocytes are sky high so that’s causing the back pain and nausea with loss of appetite. At least it’s an answer
Just fyi, for those you that are interested....Thyquidity is a new oral levothyroxine solution in the US. Kim's 3.75 ml dose isapproximately equal to 75mcg of levothyroxine. I just started on this medication also. We'll see how it compares to the tablets.
Technically is is just about identical to the various levothyroxine oral solutions available in the UK. I shall add it to my medicines document.
If anyone knows of any other thyroid hormone products not already included in my thyroid hormones documents, please let me know.
helvella - Thyroid Hormone Medicines
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