My Dr has referred me to an endocrinologist and asked them to provide advice before I get the appointment. He confirmed he would do this last Friday, but I've not heard anything yet (I realise I'm being very impatient). Does anyone know how long it's likely to take for a refferal…? I'm taking some annual leave this week, and had to withdraw an application for a job interview for a promotion as feeling rubbish. Not medicated with anything at mo as they're not sure what to do. Any tips on feeling a bit less wiped out/with no Levothyroxine?
The reason for referral is that TSH moved from 0.01 to 17. 95 in 4 weeks (and T4 high 18.9 to low 5.7 ) . I'm having another blood test this week, and prolactin test will be included (I have headaches, blurred vision and breast issues on and off and am worried about pituitary tumour).
Peroxidase antibody is negative. Thyroglobulin positive.
Have started taking vit d, but Dr not yet testing for pernicious Anaemia, have asked. Can't afford a test myself right now and worried I may have to find money to scan head.
I live in the south, likely to be referred to Southampton General hospital. Anyone any knowledge on referral times? I don't think Dr saw me as an urgent case, but didn't know and therefore seeking advice from Hospital.
Thanks
Michelle
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Also should have said, not diagnosed with anything yet. On no medication at all(other than vit d). Have been unwell for probably 20 yrs, food intolerance, undiagnosed random symptoms. Keeping fingers crossed something is found, that can be fixed so I can stop struggling with it all.
Sounds like you have Hashi's. You can have Hashi's with just raise thyroglobulin antibodies, but low TPO antibodies. But the NHS refuses to acknowledge that. With a TSH of over 17 you should be on thyroid hormone replacement. Surely your GP doesn't need an endo to tell him that!
I told him I did think I was up and down, so he just wasn't sure what to do. I'll try to call them again after next blood test, assuming it's low I'll ask for thyroxine - I am feeling rubbish at mo. Thanks
Thanks @SlowDragon and also to avoid confusion, since those tests I've had more results. 9th November:
TSH 17.95 (0.34-5.6)
T4 5.7 (7.7-15.1)
4th blood test today, hopefully the results tomorrow then I'll call the Dr again.
Dr was not interested in the results I had done privately (including antiTG) . And said he was only interested in the TSH. I think he probably will give me thyroxine if I asked for it though. I'll try that after results tomorrow.
Thanks for all of your help.
(PS I've been treated to a spa day today and am feeling a bit better :)).
I've bought myself better you vit d, 1000 iu, and am having 2 squirts a day.
Not started vit b complex yet, I will look to order now.
My diet is probably the best of anyone's I've ever met and has been for years as have had to change it so many times. I went to a nutrionalist end of last year and she was impressed , but wanted me to increase what I was eating as was struggling with reintroduction after a candida diet. I wasn't sure what was wrong but a ent consultant said I had thrush down my esophagus at end of last year, but equally it wasn't his job to sort out my immune system.... I've had intollerence testing 18 yrs ago not had barely any Gluten or cows milk since then, little sugar, little potato.... I will do an Aip diet soon, its similar to my previous diets that have made me feel better in past, I just need to be more disaplined with the reintroducion, previously have been disheartened as everything I tried to reintroduced gave me some symptoms - just going to have to accept it if that's the case, just getting my head around that last few days)
Not taken daily vit c, how much should I take?
Anything else? I already avoid plastics, use eco cleaning products, careful with personal products. (Wentz mentions being careful with metal, I already avoid foil for cooking but will try to change some cooking utensils)
I have bought the hashimoto protocol book by izabella wentz. There seems so many supplements, but not sure what is priority and couldn't afford them all.
I'll think about gut support rather than diet. And read more of those articles. Might see nutrionalist again. Unfortunately I've just read this on my NHS portal, from the endocrinologist to my Dr. I'm absolutely wiped out right now.
Dear Dr xxxxx
Thank you for your A&G letter. It looks like she had a transient episode of thyroiditis (either viral or autoimmune), which as expected rapidly dipped into hypothyroid values. I would not do anything, just observe. The natural progression of TFTs post thyroiditis is such that they return back to normal within few months and I would watch and wait and repeat her TFTs in 6-8 weeks. By then I would expect level to be euthyroid, or TSH lower, but on the rise.
She does not need to be seen in the clinic at this stage.
Lulu2red greygoose SlowDragon do you think if I said to the Dr, "I realise that the endocrinologist advice puts you in a difficult position, and you may not feel you're able to prescribe me with Levothyroxine (leave gap incase he say he would but would most likely not) but I'm thinking about self medicating (will provide all evidence to him in advance email and mention again). But I would like him to be aware so he can also understand (and help me understand) blood tests and to support me in getting regular blood tests." Do you think they would do that.
I'm happy to self medicate, but would rather Dr was on my side (even if not complicit in prescribing them).
Do you know of situations where that does occur?
That's assuming cost of self medication is achievable. I'll try to investigate at weekend and hopefully get Dr appointment Monday.
It's impossible to predict how the doctor will react. They're all different. All you can do is try. But, it's something I would try, certainly, if the doctor won't treat me off his own bat!
I know the Endo's at Southampton are busy & short of staff so it could be quite a wait for you. However they are very good!
Here is West Wales the waiting time is 40 weeks. I hope you get seen sooner. There may be a chart on the hospital website showing the average wait time. If it is a long time, go and see another GP if you can.
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
With Hashimoto's it's likely better to start on 50mcg ...,but should not be left on low dose
so weigh yourself in kilo x 1.6mcg this is the approx dose you should be started on ....or certainly will need to slowly increase up to
Levothyroxine starting dose
Some evidence showed that a high starting dose of levothyroxine produced more rapid improvements in quality of life than a lower starting dose followed by titration. The committee agreed that this was also their experience and therefore recommended a high starting dose (1.6 micrograms per kilogram body weight per day) in adults unless contraindicated (adults over 65 or with a history of cardiovascular disease).
In my experience your GP will not contradict that letter from the Endocrinologist. I would tell your GP you are too unwell to work and get signed off for 6 to 8 weeks, if he won't he needs to start a low dose of Levothyroxin. There is no guarantee your levels will recover so rather than suffer at least with a low dose it may help and just don't raise it again without blood tests. If he won't help you may have to consider self medication or just suffer in silence. I think the best Endocrinologist has to be one that has suffered thyroid problem themselves. It's a life threatening illness but they don't see any urgency, it's so annoying. I wish you well.
Thank you. I've had to take annual leave this week, as was just too shattered. And was offered an interview for a job I would love, but didn't have energy to prep or go through interview.
I have to go back in to work today, but once I have todays results I will call Dr and see if I can have urgent appointment. I'll do what you suggest re time off, but probably still work as much as I can if sign off letter allows. Hopefully he'll prescribe levothyroxin.
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