After 2 weeks on Wockhardt I felt the best I had in years and all of my hypo symptoms either went away or improved. Even symptoms I had attributed to my pernicious anaemia improved and I stopped grinding my teeth!
However, after about 2 weeks it's waning and hypo symptoms are creeping back and my neck is a bit puffy.
Results: 7/03/22 taken at 8.40am last dose levo 24hrs before, no food or drink
TSH: 2.3 (0.35-4.94)
FT3: 4.9 (2.9-4.9)
FT4: 12.3 (9.0-19.0)
I've calculated my FT4 at 33% through the range. Am I correct in saying that's too low?
My FT3 has only gone up a bit since January when it was 4.6. As I had previous T3 thyrotoxicosis (according to gp), is this a safe level?
The gp has put "normal, no further action" on patient online system, but I think I need 50mcg now.
I have tolerated 25mcg well without going hyper, which I think she is scared of. I may have a battle getting her to increase the dose because she wouldn't let me have an exemption certificate because the endocrinologist told her my January results were normal and I wasn't hypo!
I'll be needing a new prescription soon and may need to consider buying my own 50mcg levothyroxine.
Thanks for your help.
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Tuttare
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I too have Hashimotos and TED. Although my endocrinologist diagnosed Graves, largely due to physical symptoms, I was encouraged by forum members to check antibodies myself and these clearly show I now have Hashis. Of course, my endo is adamant that I did have Graves and that I've just moved from one condition to another.
For me, having T3 at the top of the range really helped TED symptoms and it was my TED specialist ophthalmologist who recommended I take Liothyronine to achieve this. I have to be careful that my T4 doesn't go over range, as (for me) this causes 'hyper' symptoms (mainly heightened anxiety, palpitations and tremor). My endocrinologist has always been supportive of me trialling small increases in thyroid medications to see if this improves my symptoms, so it may be worth trying a small increase in your Levo. However, you may find that this puts your T3 over range. I sometimes increase my Levo by 12.5mcg (at first alternate days, then daily), as I find that even a small amount can improve symptoms. I'm a fan of the 'slow and steady' approach when it comes to making changes, but we are all different and some members tolerate larger increases.
How are your key vitamins; B12, ferritin, folate and Vit D? Having these optimal also helped me, as did eliminating gluten and following an anti-inflammatory diet.
I have identified with the Hashimoto's symptoms for a long time, so maybe my Graves' has changed!
I was discharged from the endocrinologist last summer.
Since starting levothyroxine, the bags under my eyes have improved a lot, the first time since the flare in 2017. My eyes are still dry and gritty and I'm not tolerating my contact lenses too well.
My FT3 has been in the top part of the range for a long time, even when I was taking carbimazole. Maybe I'm a very good converter?
I don't really understand how T3 works to be honest. If it went over range, but I felt well, would it matter?
When I started Levo (Teva), at first I only took 12.5mcg per day to avoid shocking my system. When I couldn't tolerate the mannitol and changed to Wockhardt the tablets are so tiny it is very difficult to cut them accurately in half with a pill cutter.
I could ask the gp for 50mcgs every other day, or stay on the 25mcgs for a while longer and see how I feel. I agree with your slow and steady approach.
At the moment I'm being given a script for 28 tablets at a time and can't really afford £9.35 every single month! I was thinking of handing in the form for the exemption card anyway, but if I tick the box for myxoedema and it isn't on my records, it might get rejected? Perhaps my levothyroxine can be classed as a successful therapeutic trial.
I have B12 injections every 8 weeks at my surgery and have been self injecting twice a week since August which has definitely helped.
My folate and D3 were bottom of the range in August and, with supplements, by January they had improved. I also take K2, magnesium, zinc and selenium (not every day and away from Levo).
I have been gluten free since Coeliac diagnosis in 2014, can't tolerate too much dairy and use lactose free products.
It is generally felt best to keep within the range of T3, although some members report that they feel better when slightly over range.
For dry gritty eyes, use preservative free drops liberally (eg HycoSan or HyloForte). If you are able to get the Hashi diagnosis on your medical records, you may be able to get the eye drops free, as you've had TED (I get these free, but am sometimes issued a generic brand-which is ok as long as the drops are preservative free).
I find a pill cutter useful to add small increases in medication. Amazon sell these very cheaply!
Interesting, thank you.I used to get Celluvisc drops on prescription but, as I had to pay, it was the same cost and less palaver to buy drops myself. I used Theoloz for a long time (expensive) but recently have been buying Artelac drops when on offer.
At the moment I'm being given a script for 28 tablets at a time and can't really afford £9.35 every single month! I was thinking of handing in the form for the exemption card anyway, but if I tick the box for myxoedema and it isn't on my records, it might get rejected?
I really advise you don't tick the box. (Yes - really do understand why you'd want to, and think it reasonable.) That says you actually have an exemption certificate. Quite a few people have been fined for doing that - even when it was innocently from not realising their certificate had expired.
Ask for an FP57 receipt when you pay - you can submit that for a refund if and when you get an exemption certificate. Ask for a receipt for anything you get prescribed.
There is a section in my Vade Mecum about prescription charges with links to the official site:
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Not everything is in this one document - my major medicines document is still separate!
Oh sorry for the confusion, I meant tick the box on the exemption card application form, not the prescription. I did pay for the Levo prescriptions I've had so far and I did get a FP57 receipt for each.
I handed the exemption application form into the surgery today, but the three months to claim a refund may have passed by the time I get an exemption (IF I get one because my gp said last month that she couldn't possibly sanction one because she would be questioned as to why she prescribed levothyroxine for me if I'm not hypothyroid!).
Thanks for the other information, I'll have a look.
Well if you stay on the T4 - surely the medical exception certificate kicks in and on all your prescription requirements.
You can specify that you must be prescribed Wockhardt :
I'm sorry to read that you have issue with dry gritty eyes, please ensure that whatever lotions, potions and gels you use that they are all preservative free.
You might also find help from the TEDct - the Thyroid Eye Disease Charitable Trust :
as they can signpost you to your nearest TED clinic where you will likely find an endocrinologist on call to advise on thyroid hormone replacement levels.
There is no ' safe ' level - you need what you need to feel well and relieve symptoms.
Have you had a diagnosis of Hashimoto's confirmed or are you still a question mark for Graves/Hashimoto's ?
No, I haven't got a diagnosis for Hashimoto's, just positive TPO antibodies (Trab are now in range). Graves diagnosis was in 1996 and they've stayed with that.
I saw a TED ophthalmologist last March at Derriford Hospital who thought I had glaucoma because of the pressure in my eyes. I had an MRI (awful and I never got the results!).
He told me TED causes glaucoma.
When I mentioned in passing that I had thicker than average corneas he said "oh, thanks for telling me " and then couldn't get rid of me quick enough, just telling me to get pressure tested at opticians.
He did say that my TED wasn't active though, but didn't recommend any drops. I've bought preservative free ones myself for decades.
My usual gp is on leave atm, so I might have more luck speaking to someone else.
My body does seem to be telling me that I do need a little more Levo. 🙂
Well - I think positive TPO is a positive for Hashimoto's :
Your Graves may have burnt itself out - maybe a scan or ultra sound of your thyroid could ascertain how much thyroid function you now have :
Ultimately, as I understand things, Hashimoto's AI thyroid disease will destroy your gland and you will likely need full spectrum thyroid hormone replacement.
As I understand it, Graves is an auto immune disease that " just happens " to attack the thyroid and it is because the thyroid is such a major gland that we end up seeking medical help.
The thyroid is the victim in all this and not the cause.
The cause is one of your immune system mistakenly attacking your body.
The question is why and what has triggered your immune system and it seems with Graves there is likely a genetic predisposition maybe a generation away from you, with someone with a thyroid health issue and Graves is said to be stress and anxiety driven AI disease.
I believe Graves can burn itself out which is why it's now suggested that the longer one is treated with AT medication the more chance there is of remission.
I don't think Graves burns out or destroys the thyroid but would imagine the thyroid doesn't fully recover.
If you also have positive antibodies for Hashimoto's this thyroid AI disease does disable the thyroid gland and ultimately you end up hypothyroid and likely requiring full spectrum thyroid hormone replacement.
I do know of one person who switched careers owing to stress and only knew they had Graves when diagnosed hypothyroid in their sixties.
I guess it all comes down to the individual and the symptoms able to be tolerated but once in the medical mainstream the thinking is generally invasive with either a thyroidectomy or RAI thyroid ablation as it's believed it's easier to treat hypothyroidism in primary care than remain on an outpatient waiting list in the hospital for an indeterminable period of time.
I saw a similar useless consultant at Treliske who explained that my eye symptoms were because I wasn't cleaning my eyes properly and he repeated the same prescription i was already on which contained preservatives.
I left off the prescription medication and slowly my eyes were relieved and when i could see better I ordered my own eye drops and advised my doctor and suggested she should also let this specialist know.
I now buy my own as although my doctor switched my prescription to my own choice I'm restricted on the NHS to 1 box a month which works out at only 1 drop in each eye daily which doesn't cover the sides when my eyes need help.
Update: I spoke to a different gp yesterday who agreed to increase my dose to 50mcgs! Yay!I put the phone down and promptly burst into tears! ( I think I'd convinced myself that I'd have a battle because of the first gp saying she couldn't possibly increase my dose or ok an exemption).
Anyway, she made no comment about my high FT3 or lowish FT4. I rambled on about guidelines for TSH needing to be below 2, to which she replied "those are guidelines for people who are hypothyroid"...
I collected my new prescription earlier. Of course, I wasn't given Wockhardt, but thanks to advice here I knew to open the bag in front of the assistant and they did change it for 2 25mcg packs of Wockhardt and made a note of that for next time.
I intend to up my dose slowly and start with one and a half tablets, 37.5mcgs, and see how I get on.
It's been such a long journey trying to heal my autoimmune diseases but, hopefully, I'm now on the right path. It didn't help that it took 49 years for me to get a Coeliac diagnosis!
Thanks to all the help from people on Health unlocked, I now have some knowledge and the confidence to achieve optimum health!
I may well be back here in 6 weeks time asking for more results advice 😁.
I'm surprised you got a dose increase as your results already show a T3 at the top of the range don't they ?
Though it's quite common that Graves patients can tolerate and need a slightly higher T3 than the range.
Please also persevere with the receptionist and get the medical exemption certificate for hypothyroidism as it will coverall your medications, irrespective of the cause.
Yes, I was surprised too and perhaps it confirms that gps only go by TSH?
I hadn't heard about Graves patients tolerating a higher T3, but I was bemused why mine had been at the top of the range for a long time with a low FT4 and hypo symptoms.
I may find I'm happy on 37.5mcg and don't need to go higher. Time will tell. Perhaps I'm weird lol.
I handed the form to the receptionist so hopefully it won't be too long before I receive a card.
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