Have previously posted and have full results on the previous post from March. Now have two extra sets of results.
March 18 - TSH 3.86 (0.27-4.20) All fasting, early morning
FT4 16.03 (12-22)
FT3 5 (3.1-6.8)
May 18 . - TSH 3.29 . Non fasting, late afternoon
FT4 15.7
FT3 4.5
June 18. - TSH 0.896. Fasting, early morning
FT4 21.10
FT3 4.44
My main symptoms were fatigue, lethargy (trying to walk but felt like brakes were on), air hunger, feeling of suffocation, dry skin and cold hands and feet. Except for fatigue and dry skin, all other symptoms greatly improved since I started 75mcg thyroxine on 16/5/18. Also been gluten free for 2 months. Can now walk distances again but last few days, walking is slower again and feel that I've plateaued.
Still don't feel refreshed when I wake up and still need to take a deep breath every few minutes. Suffocation feeling started in January this year following a virus. Can generally do more each day and not having to sit forward in the evening to catch my breath but still feel worn out and far from right. I used to be very fit and active and feel frustrated when I take a step backwards.
Was referred by GP to chest clinic. Attended yesterday, lung function is good but gas exchange is borderline so following on from chest X-ray (all clear), now waiting on CT and heart scan. Doctor wants to check for clots in lung and gas exchange into heart.
My main questions or concerns are -
Is it usual to notice an improvement quite quickly on treatment and then to plateau after 5 weeks? My lethargy improved in 2 days, felt like someone had taken the brakes off.
Am I under medicated? Hopefully just early stages and consultant will increase dose.
Does anyone know about gas exchange problems? The doctor yesterday thought this is what is causing the suffocation feeling. I've researched that it can be thyroid related but then read that I may always have it!
Do my results show that my thyroid is now performing well? My worry is that consultant won't increase dose.
I self referred to a consultant in London and saw him on 16/5 when I stated treatment. He has had other patients who's blood results were in range like mine but responded well to T4 with similar symptoms to mine. He did make note about my high positive TPO antibodies. I'm back on the 3rd July but now worried that he won't increase the dose as my TSH is now in the ideal range.
I've continued to supplement with D3 (and K2 and magnesium). Vitamin D now 107. I still SI b12 alternate days and eat iron and folate rich food, as well as taking folate and iron supplements every few days.
Consultant also wanted to check for CFS etc so did blood tests for EBV and others.
I appreciate any help and advice that anyone can give me, thank you.
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Highland49
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Improvement followed by plateau and deterioration is a common sign that you’ve got used to last increase and are ready for another increase - in the absence of other complicating conditions. Good luck
I doubt your thyroid is working much at all. Levo isn't a treatment to make the thyroid better, it is hormone replacement, replacing the hormone that the thyroid can no-longer make enough of. Your FT4 is now rather high, but your FT3 is too low, indicating that you're not converting too well. Your conversion was better when the FT4 was lower. So, you definitely do not want an increase in levo. What were you taking on 18 March?
I wasn't on levo back in March as only started treatment on 16th May after seeing the second endo. As SeasideSusie has mentioned, sounds like I need T3. I'd hoped that T4 was all I needed and dose increases but I'm definitely learning that thyroid problems are far from straightforward.
Well, if I were an endo, I wouldn't have given you levo with those results. Your conversions started getting worse when you started levo. Did you have a lot of symptoms? Did you have high antibodies?
OK, I see from Susie's comments, you do have Hashi's. But, frankly, you wouldn't need T3 at this point, if you weren't taking levo. Your levo has gone too high and is not converting to more rT3 than T3. If you could get your FT4 down to about 18, you might not need T3.
The endo prescribed levo as a result of seeing my March results. He wasn't worried about requesting up to date t3 and t4 at my consultation on 16th May as he wanted to rule out CFS. It was because I asked for repeat t3 and t4 that they were tested. I'd had a virus after my March blood results so I wanted to know my starting readings.
I was high positive for TPO abs in March of 365. TSH receptor antibodies <0.04 (0.0-0.4). TG abs 97 (normal <280).
Yes, a lot of symptoms which led to me giving up work and volunteering for some weeks. Worse symptoms were the fatigue, lethargy and air hunger with feeling like I'm constantly suffocating. Dry skin, insomnia, waking unrefreshed, irritability, poor blood sugar balance, hoarse throat, neck pain, snoring, balance issues (much improved with b12 SI), poor temperature regulation, weight gain, poor concentration, intolerance to noise, poor memory, speech problems/struggling for right word and brain fog. My husband was concerned that I had dementia earlier in the year.
Yes, g/f for 2 months so probably quite early days but do wonder if this has helped my breathing problem more than the levo. Was just mentioning to SeasideSusie about the selenium, back in March my selenium result was 2.00 (0.89-1.65). As my vitamin D was borderline at 63, I concentrated at raising that level but sounds like I should definitely be supplementing with selenium too.
Any further advice on this would be greatly appreciated.
I haven't read all your previous posts, but see that you have Hashi's. Being gluten free should hopefully help to reduce antibodies, also supplementing with selenium l-selenomethionine 200mcg daily can, as can keeping TSH suppressed.
Have you been given links to Hashi's information? If not here are some
Having Hashi's means that the antibody fluctuations will mean that your results (and symptoms) will also fluctuate, something to bear in mind.
When posting results, always include the reference ranges . Because they vary from lab to lab members need to know the ranges from the lab that did your test. However, I do know Medichecks ranges
TSH 0.896. Fasting, early morning
FT4 21.10 (12-22)
FT3 4.44 (3.1-6.8)
So your TSH is good - the aim of a treated hypo patient being TSH below 1 with FT4 and FT3 in the upper part of their respective reference ranges, if that is where you feel well.
FT4 is top of range yet FT3 is only 36% through it's range so they're not in balance. It's low FT3 that causes symptoms.
Your conversion of T4 to T3 isn't brilliant but it is early days and you've only been on Levo for a relatively short while. You can have good results before actually feeling well. It takes time.
To be honest, with your FT4 at the top of the range, you don't really need an increase in Levo, it will take it over range and then you are in danger of making reverse T3 rather than Free T3. I doubt your endo would consider it anyway. You could broach the subject of maybe adding a small amount of T3 when you see your endo. You might need to reduce your Levo slightly, but certainly no more than 25mcg. But, are all your ducks in a row to ensure that good conversion can take place? Are all your nutrient levels optimal -
Vit D - I see is 107. The Vit D Council recommends 100-150nmol/L so that's just about OK.
B12 - top of range - I see that you SI B12 so that should be OK
Folate - at least half way through range
Ferritin - half way through range
Do you have gut/absorption problems? Do you have low stomach acid - easy home test can be done with baking soda - see scdlifestyle.com/2012/03/3-...
Your dry skin should resolve when you are optimally medicated. I always had very dry skin on my legs when undermedicated - taking off my trousers meant a shower of dry skin!
Sorry I can't comment on gas exchange, it's not something I have any knowledge of.
I'd be interested to hear how your appointment with the endo goes.
I'll continue taking the vitamin D to raise that a little higher. The general aches and pains are so much better.
My selenium back in March was 2.00 (0.89-1.65). Are there any implications in it being over range?
It's positive that I've seen some improvement in some symptoms and I've kept a daily tally of the severity of 7 of the symptoms, which I'll print in graph form for the consultant next month. As he was happy to start me on levo, hopefully he'll be as helpful about prescribing t3. There was no mention of hashi's by him or auto immune, so even though he has set up an endocrine centre, he does appear to be old school, even though the blood test tick box includes the antibodies as options. But at least he didn't try to fob me off with HRT like the first endo! (Which then worsened my lethargy and breathing).
Thanks for the links for those articles, I hadn't seen those particular ones. I've found Izabella Wentz's Protocol book helpful but have only done the gluten free part of the protocol so far as I don't want to confuse matters by too many changes at once. I need to do that low stomach acid test!
Just a quick update after my consultation today. The blood results have come back for testing for viruses. I'm positive for 4 - Epstein-Barr, Cytomegalovirus, Human Herpes Virus 6 and (recently recovered from) parvovirus. So because of these results, he wants to treat with valaciclovir for 4 weeks then retest TSH, t3, t4 and reverse t3 as he mentioned that t3 could be higher.
I'm to continue on same dose of levo then return beginning of September after chest clinic appointment. So feel that I'm getting there and he certainly didn't rule out t3 at a later date but is aware of problems for patients in being able to continue t3 on the Nhs. I mentioned being able to source from pharmacies outside the uk so at least I know it's something he will consider and that he wants to check reverse t3.
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