Hi, long story cut short, husband been unwell for around 9 months. Relatively well previously on levothyroxine for over 10 years with slight dose changes needed around every 12 months. Thyroid results abnormal last summer, now within ‘normal’ range but still feels unwell and adamant it’s thyroid related. Admittedly it may not be, but he feels it is.
GP and endocrinologist say these results are perfect. Lots of things online suggest TSH should be below 2.5 if on treatment. When TSH was 0.96 (0.1-5), T4 25 (12-23) was out of range. Endocrinologist classed this as suppressed TSH and said to avoid TSH below 1.
Jan- TSH 3.3 (0.1-5) T4 22 (12-23) T3 5.6 (3.5-6)
Feb - TSH 1.99 (0.1-5) T4 21 (12-23) T3 5.8 (3.5-5.6)
I accept everyone will have different baselines. But from experience does anyone with hypothyroidism and on levothyroxine feel well if TSH is 2-3?
Thanks
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Sunshine388
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Constant changes to dose frequently lead to low vitamin levels
For full Thyroid evaluation your husband needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Ask GP to test vitamin levels
Always get actual results and ranges
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how he does his tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
We retested vitamin D in January privately and it was 61 (50-150). All other vitamins were done by GP in September and were normal. Endocrinologist repeated them this month and all normal. Vitamin D is now 67 (50-150). He is supplementing with 1000 units a day. Thanks for all the information and links on the other post. Is magnesium something we should get tested? Doesn't look like that has been checked at all.
He is not gluten free. He has never had any gut/digestive issues. So unlikely to be linked to gluten? Endocrinologist tested for Addisons and celiac. (admittedly celiac bloods aren't most accurate). From secretary - all results are in normal range so will have routine follow up in 6 months. He has requested sooner but not hopeful.
I will get some magnesium for him then! Is there not a risk of over-supplementing with it if we don’t know his levels?
Had a look at your profile, seems like you’ve had a rough time. Did you find gluten free diet made most difference for you? Is it very strict gluten free like coeliac?
I’m going to look into best TSH level for hashimotos patients for his next endo appointment. It’s difficult to not rely on blood results for him as he struggles to differentiate between hypo and hyper symptoms.
Sorry to hear you are in a similar position. It's really frustrating isn't it. Were you previously well on levothyroxine? Hope you get some answers soon.
They are potentially going down the long covid/chronic fatigue route but this basically has no/limited treatment so it's difficult.
I have asked if he's depressed. He's adamant mood is low because he has no energy and is so easily fatigued and feels similar to when first diagnosed with hashimotos hypothyroidism. We are trying to build up and follow advice for chronic fatigue but he really doesn't feel this has got to the route of the problem.
No, the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing.
Thank you for this. I’m going to try and educate myself a bit ready to discuss ideal TSH when he next gets an endocrinologist appointment. He thinks he feels hypo at the moment. We are trying not to change his dose as frequently though so it’s quite difficult to know what is best to do!
Copy the PMID line into Google and open. A list of papers will appear. It is the top one. Open it and you will see it is a free PMC article. Now copy the doi: line as displayed there and paste into Google. On opening this the whole article then unrolls.
Och sunshine no need to be sorry although I appreciate your concern!Looking at your other post there and I don’t have Hashimotos so maybe I threw my oar in before checking other posts.My apologises I’m just a newbie
Been on levo for over ten years but was never rechecked until 2018 .Only reason I got checked was I had been having other ailments from 2017
I went from not being able to sit still to wanting to crawl under a big grey dreich wet boulder and hug a teddy while sooking my thumb.Blurred vision dizziness and headaches and chronic fatigue
Tried the anti depressants for seven months there.Didnt work for me.Think I should have taken hundreds and thousand instead!
I have came down 250mcgs of levo a week since last year and find similarities with your husband
There is a stigma but certainly no shame in depression!
Honestly hope you’s get things under control soon!
I’m a fairly newbie on here too, desperately looking for any advice that might help! Feel thyroid issues are poorly understood by gp’s and hoping to find out more from people actually experiencing it themselves. My husband has fatigue and ‘brain fog’ so is doing little proactively himself unfortunately.
Definitely no shame in depression. Treating mental health problems is just as important as physical problems. Equally though I don’t want to encourage him towards medication if it’s not needed!
I have a strong suspicion that all his current problems are linked to potential COVID last March. And having hashimotos already, it has caused an autoimmune response with his thyroid. I have no proof of this though and can’t fully explain it! Feel like we’ve been going round in circles for nearly a year now!
Sunshine that’s was a sweet song from Nora Jones or was that Sunrise.Will look that up now as it will annoy meEither or if it’s COVID or not sunshine you have still came to the right place.These folks on here are amazing very knowledgable and helpful.Your certainly in the right place! Start with the diet and vitamins it should help with both Covid and Hashimotos symptoms either way
As for the docs I feel it’s bureaucracy and budget.I feel they know themselves personally that there’s a huge problem simmering with thyroid issues and medication.Why discuss with a patient treatment and options when there’s a thin red line tying there hands.When I was first diagnosed I just took the tablets and carried on the same.If I knew then what I know now and have experienced would things be different approaching the Doc? All I know is there’s been quite a few mistakes coming from them as everything is either anxiety or depression.Take the advice from these lovely people and it’s a small step at a time you both will get there!
Stay safe!
P.Ssst
BetterYou Delux+ Vitamin D+K2 oral spray
It’s around £10 but you can get it for £5.91 and free delivery orders over £15
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