I'm off to my GPS today having a lipid blood test then going to tell my gp about me not getting on with levo... I was advised about 2 weeks ago to up the levo from 50mg to 75mg as I told my gp I was very reluctant to do this as I'm not doing well on levo have gut problems bad heads and I look pregnant swelling of bowles runny stools ect.. I've now developed tremors I'm scratching till I bleed again.. jittery more fatiqued but can't sleep.. Feeling nauseated.. These were my hyper symptoms before I had my total TT in May last year.. My nodding head has returned to 😩 I've not had an anti body blood test since being diagnosed with graves.. I can't work out what's going on my blood work says I need an increase of levo but when I increase I have hyper symptoms I'm totally lost my last blood work was bad posted it on her TSH was high but T3 was low.. Confused 😩😩
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birkie
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Having a high TSH and low Frees means that you are very hypo. And, that's why your doctor wants to increase your levo. That's what you need: and increase in levo.
Why do you want your antibodies tested? Which antibodies? More to the point, have you had your nutrients tested recently: vit D, vit B12, folate, ferritin? When I had a nodding head it was because my B12 was low - not drastically low, it was about 350. But, I had neuropathy in my feet and legs and I was losing the use of my right arm. Once I started taking B12, the head stopped nodding, the arm became more functional and the neuropathy improved slightly - although that will never completely go. So, it really would be worth testing B12.
My B12 was 310 ng/L.. Ranges.. 197.00-771.00 ng/L.. I'm now taking vitamin D mouth spray but gp says all other vits/ minerals are OK although my ferritin was 26 ug/L ranges... 23.00 - 400.00 ug/L my gp is chasing up an appointment with my endo ASAP... By anti bodytest I mean Im sure I'm in a flare up it started about 7 days ago I'm scratching my joints till they bleed I have scabs over my knee joints their hot and swollen new gp saw them.. same on my knuckles and ankles I'm hot and my blood pressure is slightly up I'm sure I'm attacking parts of my body I have that thing where you can write on your skin and it stays their when I scratch they come up like welts it's painful to.. 😩
Hashi's antibodies don't attack anything. And Hashi's doesn't have 'flare ups', not like arthritis or something. People talk about Hashi's 'flares' but that's not the same as a 'flare up', and is somewhat of a misnomer. A Hashi's flare is where the dying thyroid cells dumps stores of hormone into the blood, causing FT4/3 levels to rise sharply and therefore the TSH drops.
However, you could be right that you have some other autoimmune disease. But, without any idea what it might be, your doctor wouldn't know which antibodies to test for. Antibodies are very specific to each autoimmune disease.
Ignore what your doctor said about your nutrient levels. They don't know anything about it because they didn't learn about nutrition in med school. So, for them, anything anywhere in-range, has to be perfect. They don't understand the subtilties and that the ranges are far too wide. Your B12 is obviously too low, so you should start taking supplements. From personal experience, I would recommend 5000 mcg sublingual methylcobalamin daily, together with a daily B complex containing at least 400 mcg methylfolate. Don't try and buy them in the High Street, look on-line. Iggenus do a good B complex, and Jarrow's a good B12. Take the 5000 mcg until you have emptied the bottle, and then go onto 1000 mcg as a maintenance dose, together with the daily B complex.
Your ferritine is too low and was wrong to dismiss it. Go back to him and insist on a full iron panel. Iron is complicated, and best not to just self-medicate without knowing more. Post the results of the iron panel on here, when you get them, so that those who know about iron can comment. An endo is unlikely to know anymore about antibodies or nutrients than a GP, I'm afraid.
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.
Just got bk from docs they were running late 🙄 well I saw another Dr not the usual one to b honest he's just started this week in my practice. I told him my concerns with the levo.. He actually thought I had hyper because I'm showing all the signs I was when I had it I explained I had no thiyroid and was now undermedicated but going up I have bad tremors sweat. Fast heartbeat this has just happened in the last week been on 75mg for 2 weeks now.. He asked my normal doctor to come in and see me.. I thought ho no,!!! But he actually said he thinks I'm not converting T4 to T3 and my absorbtion was prob poor to so he is asking endo for T3 for me.. I'm crossing everything he let's me try it.. 🙏🙏
Good luck. I hope you get the T3. I think it’s a disgrace that anyone who has a TT doesn’t get combination treatment as a matter of course. At least my withered gland might squeeze out a bit of something useful, but if you’ve had a TT there’s not a chance. 🤸🏿♀️🥛
Thank you missgrace for your kind words❤️ been telling my gp the levos not working its obvious by my bloods I started on 125gm and my surgeon noted hyper symptoms so I've been droped by 25mg to finally being on 50gm but my bloods are not showing any improvement thank god my gp has now agreed to me trying T 3.. going up on more levo means my gut becomes worse im hoping to get some news soon.. 🙏🙏
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Latest bloods - GP reducing my levo :( 
Trying T3 only , 
Advice with latest Blood Results please, GP wants to reduce Levo as now "Hyperthyroid"
Update to Previous Post: Thoughts pls re Results, prior to seeing GP this afternoon again
