Hi lovely people I'm hoping someone can give me some advice.. I had total TT on May 8th this year I had toxic thyroid and was really ill.. My surgeon put me on 125mg levo on leaving hospital but I was really ill totally hyper he put me down to 100mg levo I saw him on the 19th of Aug where he noticed I was still hyper so no blood was taken he put me down to 75mg and discharged me to my doctors care. My next bloods are sep 23rd at my doctors.. when I saw my surgeon I asked him if I could attack any part of my body having graves.. He said you can't because you have no thyroid... Is this correct? I'm still having skin problems scratching welts ect.. I have just had a letter from my surgeon to see him on the 30th of sep??? I have no endo as he also discharged me.. But I would like to know what having graves means for me having no thiyroid
Many thanks
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birkie
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Skin problems and itching while on Levo could be caused by an intolerance or an allergy to one of the excipients or fillers in the tablet you are taking.
Look on the box of the Levo you have got, or read the Patient Information Leaflet that came with it, and find out who manufactured it and what it contains, including the fillers and excipients. Make sure that you start getting your prescriptions on paper from the surgery so you can keep control of them yourself. Then phone up pharmacies you can get to in person and ask if they can fulfil your prescription (read it out to them) with something other than what you are currently taking. For a list of medications that are prescribed in the UK see this document :
Note that some makes of Levo are sold under multiple different names. Start keeping records of what you've tried, dates you took it, how much you took per day, and what symptoms you had.
Note that it is usually only the Levo mentioned on the first three pages that will be prescribed on the NHS. Anything else e.g. liquid Levo is something that can only be prescribed after a BIG fight, or it might never be prescribed at all, even with a fight. Anything other than bog-standard Levo in tablet form is a lot more expensive than the straightforward tablets.
If you find a brand of Levo that you can tolerate ask your doctor to prescribe you specifically that brand. Pharmacies are then obliged to dispense that brand.
Hi thanks for the reply but these problems started when I had my thiyroid I was in hospital numerous times with bowl stomach heart probs ect. I'm still having problems just wondered if graves sufferers can have auto immune problems as my surgeon says I can't because I have no thiyroid..🤔🤔🤔
Thanks again humanbean I thought that I've read up on it and it pretty much says what you said...my surgeon really doesn't want to answer my problems he wouldn't even discuss my blood work saying he knew I was still hyper just by looking at me..and I'm no longer with an endo,,at the moment my left ear drum has been sucked in and I'm deaf on that side I also have clear liquid running from my left nostril and my eyes are watering really badly I have an appointment with ENT but it's not till nov😡 So that's why I asked my surgeon if I could attack parts of my body having graves as I said he said no....🙄🙄
Anyone who has one autoimmune disease is more likely to get another one. It doesn't necessarily have to be related in any way to Graves' Disease, I think it could be anything. But some conditions tend to be more likely in conjunction with thyroid disease than others.
This link is to an American list of the most common autoimmune diseases, so I don't know if the same list would be produced in the UK. I would guess there would be an awful lot of overlap between the US and UK on this issue.
Removing your thyroid should help eliminate some of the issues that are created by your thyroid being attacked. But that clearly is not happening for you.
Saying he can tell you are still hyper by looking at you is a little arrogant if he hasn't tested you. You certainly need to see your blood tests. You could call his secretary and ask for any blood tests that he's done to be sent to you. I did this and although it took a couple of calls, I did get a copies.
It takes around 8 weeks for your dosage to settle in your system and therefore difficult to get just right in the months after your thyroid removal. If you had your thyroid removed in May, he has barely allowed time for the medication to have the correct time to work. You do have the right to ask your GP to ask for a new referral. Also ask your GP to do a full blood panel, TSH, T4 and most important T3, along with FBC, iron and vitamin D, then get copies
I can tell you that in the period after thyroid removal a lot of people feel pretty off but that's about finding the right medication. But you certainly can feel a lot better.
He noticed my tremor said no bloods were needed put my Levo down from 100mg to 75mg then test in another 6 wks...my bloods are booked for the 23rd of Sep. I have asked for copies of my bloods and are still waiting..it's such a bad way finding out what yr best level is by adjusting the Levo I'm still hyper even on 75mg 😭
I had tremors too but definitely before I had my thyroid removed. So I do agree with that being a hyper symptom.
It is very difficult to say either way without actual blood tests. I would not like to advise wrongly.
My advice would be if you are worried and cannot wait for your endo or doctor to test then you could pay for Medichecks or Blue Horizon tests.
I am 5'6" and weigh 9st 7lbs and I take 100mcg and that is enough for me. I started on 150mcg after removal and I worked myself down to 100mcg over a few years!
My endo has discharge me I think the levo is to large a dose causing me to be hyper my bloods are to be done on the 23rd of sep.. So need to wait to see what they come back as.. 🤔
Hi Birkie, sorry I can’t really answer your questions as I haven’t experienced what you have gone through. I know you have had a really hard time. I just wondered if you are finding Levo hard to tolerate in same the way as you reacted to the Hyper meds. You seem really really sensitive to medication. Just a suggestion. Good luck. x🤸🏿♀️🥛
That was my only concern when I was having my thiyroid removed I asked what would happen if I was not able to take the levo but my surgeon said it would be OK.. 🙁 And not to worried about that 😕
Bloods should be retested 6-8 weeks after any dose change in Levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves or Hashimoto's
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Many Graves patients find strictly gluten free diet helps
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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