So ladies & gents, as my title suggests my current lab results are
T3 1.9 - (2.8 -
T4 6 - (9.0 - 22)
Tsh - 96.22 (0.22 - 4).
Everything else is in normal ranges, previously Vit D, Folate & Ferritin have been in lower ranges but have worked hard to get them in better ranges n continue to take the supplements for them.
I take all medication as I'm supposed too. Regular intervals with/without each other n food etc.
I've got both sets of antibodies for Hashimoto's & Graeves.
My symptoms are ridiculous as you can imagine, I've never had a stable thyroid since being diagnosed with hypothyroidism over 10 years ago.
My immune system barely works, i have had meningitis 3x in 5yrs and pneumonia regularly as in 3/4 times a year. That's without the kidney, urine, chest, throat, ear infections.
So basically does anyone have any suggestions for me to improve?
My endo is fantastic and I have monthly blood test and contact with him or his secretary.
My tsh has been over 100 before and I received an injection of 2000mcg which made me feel amazing for 3 weeks but they cost over £1k per injection and the endo wants me to try higher doses of levothyroxine before he commits to monthly injections. I kind of understand his logic but I'm thoroughly fed up now. I'm 36yr and can barely leave me house. Do I stand anywhere legally asking for the injection does anyone know?
I'm sorry I've waffled and will take any advice given.
TIA x
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LornaP
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My endocrinologist has only been my endo since I paid privately to see him - he's the best around near me. He took one look at my notes n previous history and said he would have me on his NHS list as a patient because I have been failed by them. I then seen him 3weeks after, that was Sept.
I had the injection at the end of Nov, through no fault of his. It had to be requested by top dogs because of the cost. Then everything started to improve, my tsh went down n down each month as my levothyroxine was upped - I was originally only on 100mcg.
He's currently out the country and has been since my latest blood results have come through. My levo was upped by 100mcg at the same time. Next blood test is Thurs so results will be Tues & he'll be back on Wed. Which is why I'm asking now what to ask him or expect from him. Lack of absorption has been mentioned previously but then my body will play game and bring my the down in the 50's.
Honestly I just don't know what to do for the best. X
Bring what down into the 50s - your TSH? Cos if that’s what you mean, that’s still awful - and besides, it doesn’t matter how much your pituitary pumps out TSH, whether it’s 10, 50 or 100 - your thyroid’s clearly knackered and can’t produce any thyroxine on its own - it’s been decimated by Hashimoto’s. And you’re not absorbing levothyroxine via your gut, but clearly you can via your bloodstream. So that proves you need the levothyroxine - and that you need it to be delivered via injection.
But I really would want to know, if I was you, why I wasn’t absorbing it via my gut and what the problem there is - whether it’s some kind of inflammatory bowel disease or coeliac disease etc. Because that shouldn’t be ignored. Even if they get your thyroid issues resolved by injection, that’s not solving the mystery of why tablets aren’t being absorbed.
I agree! She desperate needs extensive diagnostics. Aside from all the blood tests and thyroid ultrasound that I mentioned below, a colonoscopy and upper endoscopy, to see what’s inside. Biopsies for Chrones, Celiac (forget the blood test), and other autoimmune GI tract diseases. Also need to do a stool test to test for bacteria’s, parasites, funguses. Seriously! Do not be afraid to do this test. With your history, I not be surprised to find one or more things on this test. You’d be surprised by how just one of these types of infections can lead to malabsorption of nutrients and medications, and many symptoms.
Well, the first thing I thought reading that is that you’ve got major gut absorption issues. Please tell me your doctor has been investigating that? For example, have you had an endoscopy/colonoscopy? Any signs of Crohn’s? Could you have Coeliac Disease?
What levothyroxine product do you take? Have you tried other products (e.g. different makes)?
Do you take it with water?
In the UK, the patient information for all levothyroxine tablets offers the suggestion of dispersing the tablets in water for those such as children who cannot swallow tablets. Have you tried that?
Yes, definitely waffle. Tell us anything that you think might help! For example, when you say your vitamin and mineral levels are better, how better is better? In range but bumping along the bottom of those ranges?
And hey, if a levo injection (didn’t know there was such a thing!) is needed to make you well, it shouldn’t matter how much it costs.
It seems extraordinary to even consider the possibility that there is an injection which is a hundred times greater! That is why I thought levothyroxine a possibility - or some special depot product.
Morning, i do apologise, i fell asleep this morning.
Firstly the injection was T4 at a dose of 2000mcg, given in 4 injections into my stomach all within seconds and that was with my TSH levels at 100 dead on but t3 & t4 in lower end of normal range.
4 weeks later my Tsh was in the 50's which is the best it's been in months. I felt so much better.
My Ferritin is top level of normal, my vit d is in the 70's from the 30's so still lower but more than doubled and folate again top levels. I took folate tablets & iron tablets so i can obviously absorb some tablets.
I also have arthritis of the spine n degenerative discs so take codeine and morphine slow release tablets again they work for me. I do have to take laxatives every day as you can imagine but my levothyroxine is took between 4am -6am depending on when I get up for a wee lol ! Plus i take it with water even try dissolving under my tongue. But make sure there's 4hrs between anything else.
My makes of levothyroxine do always change brand I can definitely say that.
I have been diagnosed with M.E but I don't really think that is true, it's because of my thyroid n the symptoms.
I dont have an issues with my gut as in chrons etc as long as I take laxatives every day it's normal. I do obviously take opiates most day because of back pain so laxative use is to be expected with my thyroid problem too.
Hi Lorna P. About 20 years ago I was on 350 mcg per day of Levothyroxine and I felt dreadful and in total despair I changed to another GP practice. My new GP was horrified at the 350mcg and immediately reduced it to 250 and then 150 mcg. Although I have never returned to normal or felt really well, I have never felt as ill as I did on the 350mcg, which my GP said was having some kind of reversal effect on absorption. I don’t know how you have arrived at 350mcg but hope it might help to know that symptoms can improve sometimes when Levo is reduced. Sending you my very best wishes for recovery LornaP. Take care of you x
Levothyroxine cannot be dissolved in the mouth as the molecules are too large to be absorbed through the tongue, so tablets should be taken with one full glass of water.
I am now well and my TSH was 100 on diagnosis. It is a journey but help from the forum will assist you. I've never seen such results before so you've had a truly awful time.
Hi LornaP ~ I feel for you, what a nightmare! Have you tried taking magnesium citrate for the constipation instead of laxatives? I have had lifelong constipation until I started using it ~ I use viridian magnesium citrate powder but there are many makes. It's much better for you and more effective IMO. Good luck with it all 🍀xx
Are you taking an iron supplement? If so, please stop immediately. If your ferritin is so high, this is not good! You might have iron toxicity and possibly organ damage from excessive iron. Testing ferritin by itself does not ever tell you your actual iron status. Without a compete iron panel, you will not ever know your actual iron status. You can have low, middle or high ferritin, and all your other iron values can still be toxic leveled.
If you’re still on an iron supplement, this could be contributing to your constipation, as iron is known to do.
Thyroid med molecules are too large to be absorbed sublingual. They are absorbed in the gut. You only need to wait 1 hour after meds before having food and drink besides water. No need to wait four hours.
Honestly, I'm not convinced that you don't have a gut problem just because you can "go" with laxatives. That just tells me you're hypothyroid and undertreated. I don't think your endo is anywhere near bothered enough about you! Yours is an extreme case and if I were you, I'd be jumping up and down (though I appreciate you can't... :))
I heard a rumour that there are warehouses containing a lot of placebo thyroxine along with other placebo medications. Some are not in blister packs and non skilled labours are handling this stuff on a daily basis. Not only does it contain placebo stock it also stocks other medical supplies. My son has worked there and told me he has seen my medication there. I'm wondering if perhaps they have mixed up real levo with its placebo equivalent, he got sacked as there were too many mistakes going on.
Have you tried Inulin? This pre-biotic (mine is chicory root bought from your local high street health food store) is a natural bowel function enhancer (does make you fart though!) Check that you can take it with your other meds.
Hi LornaP, Oh my! Hashi’s and Graves at the same time! No wonder you feel so horrible. What kind of injection was it? I agree that your immune system barely works. Your immune system is in overdrive; hyper active to every little bacteria, virus, etc. I think you need more testing, so you can get to the bottom of this. My guess is that one or more of your immunoglobulins is deficient. This can cause much of what you are going through. Have you had your immunoglobulins (IgG, IgM, etc), Protein Electrophoresis tested?
If you do, the treatment might be long term or phrophilactic antibiotics, and or possibly immunoglobulin therapy. You’ve got to reduce your bacterial load so you stop having chronic infections. This is effecting every part of your body.
I also wonder what your viral and bacterial load is? Have you been tested for EBV, CMV, c. pneumoniae, chronic strep, hiv, all the herpes viruses (can have no cold sores, etc), even Lyme? Treatment here might also be antibiotics, and also antivirals, such as acyclovir, etc.
How high are your thyroid antibodies? At such a high TSH, plus non existent FT3 below range, too low FT4....you definitely should be taking some T3 in addition to T4. You are not converting at all. Your body needs T3. I would expect with your levels, taking some would make you feel better in as little as 2 days because you are so deficient, and because T3 is fast acting and has a short half life.
With your history of chronic infections, I would expect that a doctor would have you on long term and rotating antiobiotics already, as well as antivirals.
Lastly, if T3 doesn’t help a lot, I am wondering if you are a candidate for a thyroidectomy? Is your thyroid enlarged? Have you had a thyroid ultrasound and fna to rule out cancer, if you have nodules?
Hi Lorna, I read through some of your posts from a few years back, will read thru the rest when not on a phone. I noticed that way back then, you had a procedure for unusual cells on your cervix. Have you followed thru with scans and diagnostics since then? Very important after usual results come back, then had a procedure. Need to make sure it’s still status quo.
I also saw more info about Kinsey infections. Have you had an ultrasound and other diagnostics on your kidneys?
I'm going to try & answer all questions in just one post so pls bare with me. As you can imagine my brain fog n ability makes all of this hard work.
Iron levels have previously been so low I've had a transfusion, finally got that higher n Ferritin started to go to low. I take 1 tablet of Ferritin n folate of 5mg once a week as directed by endo. So feel doubtful it's too much.
I've never been seen by immunology despite numerous infections ie, meningitis 3x and shingles in my mouth 3x a year minimum. Yes have had kidneys & bladder scanned & camera - my bladder can be overactive at times but only for a few months at a time. It's usually once I've had a few uti / kidney infection in a row.
I currently have pneumonia but its manageable at home, antibiotics are keeping it at bay but aren't removing it.
My thyroid was scanned in Sept and shows it is diseased and have one small nodule. It isn't enlarged.
I do now take levothyroxine with water, i should have been clearer and stated I had tried it sublingually (sp).
I feel bett er with the dose at 350mcg t4 and my endo doesn't like t3 because of the risk with hearts...... He's not opposed to it just prefers to try everything else.
I did have grade 3 cells on my cervix, was treated n now all normal results with yearly smear tests.
I was sterlised during a c/s (first c/s) with baby number 4 - children are now 19, 11, 10 & 7yrs. Yet unbelievably still managed to fall prg in Oct 2016 but miscarried early on. Awaiting a gynae referral atm. Periods are absolutely horrendous, i can lose 300 + ml of blood in 24hrs (I use a moon cup and towels) due to the huge blood loss I'm unable to leave the house 2-4 days every period.
I have literally every symptom of hypo as in 200+ yet my heart rate is always above 100 and blood pressure low.
Some days I'm unable to get out of bed n leave the house only 2/3x a week n always suffer because of it.
I tend to pace myself usually as in one day doing one day resting. I have an amazing support network Praise The Lord. I also receive full PIP which means I'm able to pay for more support too.
I do hope that is everything, thank you all so much x
Oh LornaP, your story makes me so sad and so angry that you have not yet received proper medical care, diagnostics and treatment after years of infections and illness. What is wrong with doctors who let patients go on suffering for years?
1) You said, "My Ferritin is top level of normal,", that is high. What is the number, level and range? Top of normal is not normal if you're only taking one 5 mg pill per week. Ferritin so low you needed a transfusion is also not normal. Something is very wrong here!
Then you said, "So feel doubtful it's too much". Your ferritin sounds like it's very high and it shouldn't be on only one 5 mg per week. With ferritin at top range, only way to know if it's too much or if your iron is actually not toxic is to get a complete iron panel. Ferritin alone does not tell the entire story and can be very misleading. I don't think you want to permanently damage organs or go into organ failure. Test a complete iron panel, or all the other iron components, just to make sure?
2) You said, "My immune system barely works" and listed "meningitis 3x in 5 yrs, pneumonia 3 or 4x per yr, and infections in kidney, urine, chest, throat, ear infections", and then asked, "does anyone have any suggestions for me to improve?".
Then said, "never been seen by immunology". Well, this really does sound like potentially an immunoglobulin problem or other immunologic problem, based on you having constant infections one after another for years. If you do have this problem, there are several types of treatment that are successful. Imagine how wonderful it would be if you didn't get constant infections anymore!
My Answer: You need to see an immunologist right away. I cannot believe that with all of your chronic infections, your doctors didn't send you to see one sooner. It's obvious with all these infections that you need to see one for thorough testing and diagnosis. Like you said, your immune system barely works. It's not working. It really sounds like you have a immunity disorder. If so, this needs to be treated. If not, then some competent doctor needs to get to the bottom of why you are constantly having infections. You should not suffering for infections over and over, year after year. Seeing an immunologist should have happened yesterday, sorry. Can you go see an immunologist?
3) Current pneumonia not responding to current antibiotics. Sounds like possible antibiotic resistance. If this antibiotic isn't working, you need to get a different one. Can you go get a different antibiotic?
4) T3, risk to the heart?? Only if you have too little or too much, but this applies to T4, too. You have non existent T3. Your endo should know that if you have either too low thyroid hormones or too high thyroid hormones, this can effect the rhythm of your heart, leading to atrial fibrillation (irregular rhythm), palpations, etc. You have an FT3 level that is 1.9. Your bottom lab number starts at 2.8. You don't show the top number in your lab range, but if I recall correctly with similar lab ranges, your FT3 should be way up over 4.5, if not closer to 5.75. You are MILES from that level. Can you ask for T3, so that your levels are not below range, and then you have the chance to feel a bit better?
5) Your period can be messed up when your other hormones, like your thyroid, are messed up. These systems work together and if one is way out of balance, the other often follows. Have you had all your female sex hormones tested, to see what your levels are?
6) Unable to get out of bed because you're chronically ill with infections and a malfunctioning thryoid. I'm so sorry you're so ill. Please see an immunologist, so you can get to the bottom of all these infections. These infections are effecting every organ of your body, even if it's indirectly. Infections stress your thyroid and can cause antibodies to rise. Those elevated antibodies then interfere with thyroid function and production of thyroid meds. Constant infections and abnormal WBC, neutrophils, etc, levels can effect absorption of medications and nutrients because your body is busy fighting infections, and then other bodily systems can "get broken" (malabsorption).
This becomes one big circle of illness and stress on your organs. Every cell of organ, fiber, and cell are all connected. When one type or several types go haywire, eventually more and more systems within your body are effected, as you are experiencing.
Maybe it's time to see a different endo or different type of doctor, who is vested in getting to the bottom of all this, and who will get your the diagnostics and treatment you need?
Big questions: Do you think it is important/critical for your health and well being for you to see an immunologist, or is there some other way that your doctor is planning on treating you, but has failed horribly, after all these years of infection? I'm shocked and saddened that he has not made it a priority to get to the bottom of this, but instead he's left you suffering for many years.
Only by blood test that were done at different times through out the day, then the next day they did the blood test, then give you an injection of and then you have another blood test 30 mins later. Which to my surprise came back all normal. X
That’s very strange ur adrenals should be very tired I guess and weaker by now so I was wondering if u have done adrenal SST test.I will be doing it tomorrow by injection .I am convinced that I have adrenal issues as have hissing in ears stomach pains runny stomach NDT seams not working properly also got back pain and feeling extreamly dizzy as sugar eases the dizziness but I ain’t got diabetes .How are u feeling now? Any luck so far to get levels right? Anything ?
LornaP, so having dose increases improve your blood tests at all? Do you feel any improvement in symptoms?
If either of those do happen, I'd keep on increasing every 6 weeks and see if you get to a dose that does help you.
I'm on the equivalent of about double what you take (I take NDT). I believe this is some kind of thyroid hormone resistance, and yours sounds like the same. This can be genetic, but can also be caused or exacerbated by adrenal or vitamin problems. I'm still looking into mine.
The classic treatment for thyroid hormone resistance is very high doses of T3 taken once a day. The idea is that the high concentration of T3 can push it's way into our receptors.
I'm still trying with NDT just because I'm still getting improvement. If that stalls out I will try with T3 only.
Your endo sounds like a mixed bag. Good, in that he's actually doing anything - mine just told me there was no more the NHS could do for me and I was stuck in bed for life.
Bad, in that a lot of good suggestions he wants to put off till later.
It may still be worth jumping through his hoops. All these things take a long time! I self-medicate, and have been raising my dose for 30 months, now, and am just at the point where I can wash and dress myself, and am starting to go for walks and get out a bit more.
It sounds like you may not have had a dose increase since November? That's 6 months ago! You should really be having increases every 6 weeks. If he doesn't want to try T3 or regular injections, he must give you a decent dose!
You can actually do the maths and work out how much T4 you need.
If the dose was 2000mcg, and it made you feel better for 3 weeks, then divide 2000 by 21 days, that's 95mcg per day. If my numbers are wrong, fill in with the true numbers.
So that's the kind of dose increase you'd need, assuming your gut is absorbing some (as in, assuming oral tablets give any improvement). 95mcg isn't actually an insane number! It's unusually high, but is around a third of your current dose (less than mine).
I don't know that it's worth it. He's not treating her properly or getting to the bottom of all these infections! What is there to wait for, if he didn't do it many years ago? Highly doubt he's suddenly going to become competent and see the urgency in the matter of her health. Her situation is so saddening and maddening. Years of suffering.
Her problem is much, much bigger than just needing more thyroid medication. Yes, she needs an increase in medication and also needs T3. All these infections are effecting her entire body, including her thyroid. She needs to see an immunologist and probably should see an infectious disease doctor to see what they say, too. If these chronic infections were treated correctly, she wouldn't still be having them. If she wasn't having them, there is a very good change that she'd be able to absorb thyroid medication much better. It's also possible that her thyroid would produce better levels of thyroid hormones on it's own, leading to a need for much less that 350 mcg T4.
All these infections are probably not helping with conversion of T4 into T3, either.
So what causes thyroid issues, i was told either radiation or surgical removal now we have auto immune. If there is something which we are all digesting that causes theses symptoms then they should be liable for prescription cost. If our environment is to blame then those polluting it with heavy industry should be questioned.
I was diagnosed with M.E and do have many, many symptoms and had a lot of reasons / triggers for it. I do believe that the diagnosis was fair at the time.
If you read my latest reply my endo has been incredible compared to any other Dr/Specialist have been. He's the only one that is looking at why this is happening. He's giving me blood test after blood test for everything and anything.
I've tried today to get an appointment with my GP to discuss a referral to an immunologist and have been researching private ones too.
I'm going to try & make sure I have the same brand of levothyroxine and have left a message with my endo regarding that. He'll get back to me tomorrow. Having thought about that, for the first 7 years of taking levothyroxine it was always the same brand. So maybe thats where things started to go downhill. The last 4 years have been the hardest.
The last month or so I've slowly been reducing gluten in my diet n upping my fibre. However, most days I don't want to eat so I have to push myself to do so, I'm still 17.5 st, a weight gain of 4 st since my first endo reduced my T4 dose to 75mcg....I also struggle full stop to cook meals for my family because physically Im just unable to do so. My mum cooks for us 3x a week thankfully and when im having a better week i try to bulk organise/chop veg etc and put them together in freezer bags to use in my slow cooker.
Does anyone recommend any definite supplements for me? I take vit d spray every day, folate 5mg once a week and Ferritin once a week but can't remember the dose.
I've just bought a slow release Vit C tablets and awaiting the delivery.
But is there anything you wouldn't want to go without.
For vitamins, the important thing is to get tested for poor levels. The first ones to test are: ferritin, folate,vit B12, vit D. Vitamin issues are one possible reason for absorbtion issues.
With gluten it's all or nothing, even a tiny bit will take you off track. But definitely worth doing, as it lowers antibodies for a lot of people.
Where would I be able to get NDT thats from a reptuable pharmacist? I'm really interested in going down that road? My endo as I've said, is one of the best in the country. However, like you say he like a to try every other avenue before committing to anything. Unfortunately he doesnt have access to my gp medical notes due to them being in different counties etc. The hospital and my GP are at fault there. He only knows what I can tell him and obviously I'm only able to tell him about the minor infections since Sept and the bigger infections such as meningitis because I remember the dates. He (Dr Patel) and his secretary are trying to sort the medical notes but honestly it's like banging your head against a brick wall.
Anyway, any more information regarding the NDT would be extremely welcome.
If you've got an extraordinarily good Endo you may be able to get it on prescription.
But the vast majority of people have to self medicate, buying their own from overseas.
Personally I would advise trying T4 + T3 before NDT. Just because it's nice to try everything out in order. Or particularly T3-only, as that is the first thing to try with hormone resistance.
But anyway, for self medicating I just hung around on the forum for 6 months or so, reading up all I could and learning how to interpret the blood tests and so on. At that time I was too ill to read properly, but am just starting to read journal articles and books a little, now.
It's a hard decision to make, for someone in your position, whether to persevere with the doctor you've got, who is willing to try a few things, or to go it alone. I waited till is been self medicating for about 6 months, and was sure I would stick with it, before telling my Endo. Luckily she is quite sympathetic. If yours doesn't like to use T3 he may be less flexible! But I've also never heard of anyone getting access to these 2000mcg injections, and sounds like neither have the very members who are very knowledgeable about the NHS formulary, so it may be that you can only get access to them through this one department.
A single mention, such as above, can easily be accepted without suggesting that you intended that. Unfortunately some people have posted numerous times.
Will answer all questions (hopefully) in one again.
The Endo I have now as only been so since September.
My previous endo was useless and would only see me once a year, didn't listen to anything I had to say n barely looked at my blood results, however my tsh was either 0.005 or up to 10 but I would just be told to decrease my Levothyroxine. I ended up on just 75mcg and really unwell. If n when my tsh was in its 50's plus with this endo, she'd simply say that it wasn't possible and there had been a fault at the lab??????
So I researched and found Dr Vinod Patel and paid privately to see him. He was then disgusted by the care I had received so referred me to his NHS clinic. I had my first appointment with him at the end of September 2017.
He immediately upped my T4 to 150mcg without blood test results, then my tsh was in its 30's so Oct 5th it was upped again to 250mcg. I had another blood test last week of October and Tsh was 100 dead on. I was called into the hospital as an emergency the day after results were given to have the injection, however the pharmacy didn't have it in stock. So i then had to wait 6 days whilst they reordered and got approval from the big wigs because of cost - over £1000. I felt so much better for 3weeks after injection.
Had another blood test Dec - tsh in the 50's, still feeling okish compared to 'My normal'. T4 risen again to 275mcg - endo was concerned that I'd basically tripled my t4 in less than 3 months and wanted 6 weeks before retest.
Unfortunately I was in hospital with a severe kidney infection in January and hospital procedure wouldn't allow me to attend my outpatients blood test appt as an inmate - endo was out the country for 4 weeks & normal hospital Drs wouldn't test my thyroid levels because they'd only been tested 6weeks before. It was such a joke!!!
So we're now in February and my blood test results were lost / gone missing etc. GP refused to test because they've been done in the last 6 months.
I then had shingles & endo didn't want me to have things tested til I was clear because of inaccurate levels.
Had blood test at end of Feb & TSH was in its 30's and T4 was upped to 350mcg.
Seen Endo 3 weeks ago and had blood test. He was happy that everything was going in the right direction but not happy about my constant illnesses.
I rang for my blood results and was told that my tsh was 22...... I was happy with this and have a blood test next Thursday so thought nothing more of it.
Until Dr Patel rang me in abit of flap because one of his drs had ballsed up and my blood test results were as my very first post. I'm now seeing him on Thursday and this is when I remembered this website and wanted some advice. So Dr Patel is in my eyes is good & supportive.
With me having my ME diagnosis & Hashimoto's / Graves antibodies attacking my immune system so my GP says thats why I have constant illnesses. And just deals with each illness...... not the root cause.
I've never heard of an immunologist before so will be demanding a referral tomo or will go private if need be.
Sounds like your treatment for the past few months is a bit of a shambles? And has your TSH raised and lowered independent of dose increases? It also sounds like you've mainly been getting TSH tested, and not the full thyroid panel.
As you've got money to go private, maybe you should take over some of the monitoring immediately. You can get a finger prick mail order test very easily - ThyroidUK website tells you how.
Then make sure you get a test done 6 weeks after any dose adjustment. Keep it all neatly in a spreadsheet. Especially so you can see what freeT3 is doing. If things are going up and down antibodies are the first suspect. You can calm these a bit by going gluten free, try dairy and other possible food in tolerances as well.
I found once I started tracking my blood tests that what I'd had on the NHS was very messy, and doses had been chopped and changed without really having blood tests to keep track of what had happened.
Ideally you want a blood test every 6 weeks, the dose adjusted, and then stay stable in that for 6 weeks and adjust again.
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Please see an immunologist, so you can get to the bottom of all these infections. These infections are effecting every organ of your body, even if it's indirectly. Infections stress your thyroid and can cause antibodies to rise. Those elevated antibodies then interfere with thyroid function and production of thyroid meds. Constant infections and abnormal WBC, neutrophils, etc, levels can effect absorption of medications and nutrients because your body is busy fighting infections, and then other bodily systems can "get broken" (malabsorption). 
ur adrenals should be very tired I guess and weaker by now so I was wondering if u have done adrenal SST test.I will be doing it tomorrow by injection .I am convinced that I have adrenal issues as have hissing in ears stomach pains runny stomach NDT seams not working properly also got back pain and feeling extreamly dizzy as sugar eases the dizziness but I ain’t got diabetes .How are u feeling now? Any luck so far to get levels right? Anything ?
TSH Rising with increased dose of Levothyroxine?!
Test results show overmedicated but I don't feel it in the slightest - help!
