My story... had a right thyroid and isthmus removal due to a benign 3.6cm adenoma in 2013, was presenting hypo symptoms but TSH “normal” never given any supplement.
Still symptomatic 1,2 and 3 years later, diagnosed with vit D deficiency ( 3 month high dose supplement given) and B12 (12 weekly injections on going)
Still in 2019 am symptomatic
Cold skin
Dry flaky skin
Muscle and joint pain
Fatigue
Dizzy spells
Thick fat on waist
Very low mood
Loss of libido etc etc etc...
TSH tested this week level 4.4 doctor says result is “neither here nor there”
I feel like I’m going mad?! Is it really too much to entertain that my thyroid nubbin might need a little help?!
Has anyone else experienced a lobectomy and hypo symptoms? Any advice/experiences greatly appreciated! Many thanks x
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Tnorts
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You really need FT3 and FT4 tested at the same time as TSH. If either of these are very low it could indicate a trial of levothyroxine. If they are below the lab range it shows you are hypothyroid and need some levothyroxine. If they're well within range then you need to seek another cause for your sympto. S and could ask the doctor to conduct further tests. Have you had full blood tests and did anything show up.? Has the doctor ruled out coeliac disease since your vitamin absorption is poor? Have you had calcium levels checked?
It's recommended on this forum to take K2-MK7 along with vitamin D supplements.
Thank you for your reply, I think the T4 was normal but there was no mention of T3, I’ve never been tested for any other auto immune disease like coeliac although my gut feeling is thyroid, I have only had any of these symptoms since having the tumour before and post op. I was low vit D but never tested again after initial prescription, when I asked for a repeat they said there was no need to repeat as my levels would be topped up now and there was no need for ongoing supplements from the gp and I just left it at that.
Definitely follow slowdragons advice. I had one lobe and isthmus removed and was ill for years with no help from NHS but slowly recovered by supplementing the right vitamins, going gluten free and then finally getting the right advice from a good specialist on the correct levothyroxine dose for my situation. I had to research the doctor and ask for referral.
Low vitamin D and low B12 are extremely common when hypothyroid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Thank you so much for all your information! How kind! I’ve never been tested for any other auto immune diseases or coeliacs, my gut feeling is that it’s thyroid, I’m loathe to push my gp further than the repeat test in 6 months as I just get treated like a hypochondriac, if you don’t fit outside their levels then you can’t possibly be ill! If I get a self test kit and it comes back hypothyroid what do I do with that information, do I take it to my gp? Also, you mentioned folate and not folic acid, should I not bother with folic acid ? Sorry so many questions I’ve never had answered before! Thank you again!
Suggest you improve vitamin D and B12 and folate for 6 weeks then get full thyroid and vitamin testing as early as possible in morning and fasting via Medichecks or Blue Horizon
Come back with new post when you get results
Meanwhile email Dionne at Thyroid UK for list of recommended thyroid specialists
Re. Your results above, you need the lab ranges included for us to make accurate sense of the results as lab ranges vary. Most labs top range for FT4 in the UK is around 20 or 22 with bottom of the range around 12 but as you can see from other posts this can vary so your FT4 could be mid range or low depending on the range. It's likely within the range is my guess but guessing isn't good enough. You needs the accurate facts. Low iron can prevent efficient conversion of thyroid hormone. Ask for ferritin to be tested or better still a full iron count. Doctors don't seem to know or want to check ferritin to ensure efficient thyroid function.
It's likely that your vitamin levels are causing your symptoms and so ask for further investigations on why you are not absorbing vitamins properly. When my TSH was 11.0 and my FT4 was below range I did not feel terribly unwell as my vitamin levels are great after supplementing. The main problem I had was dry eyes and skin. If my TSH had stayed above 11.0 for a long time I'm sure I would have felt unwell. But the point I. Trying to make is that your FT4 is in lab range so symptoms would be very slight if its a little on the lowish side, therefore there is likely another explanation. Don't give up but ask your GP to pursue it as you are entitled to good care as much as the next person.
Make sure you test FT3 which stands for Free T3 and not TT3 which stands for total T3. It's the 'Frees' , FT4 and FT3 along with TSH that you want to test.
I thought the same when I first came to this site a couple of years ago.
The help is truly amazing and I'm proof that you can turn it around, with or without the help of your doctor.
It is essential you get bloods taken as detailed above.
Your doctor may help but if not there are companies who can do the blood tests for you. Then repost the results plus the ranges back on here and people more able than me will take you through the next steps, if necessary.
I've no knowledge of your thyroid situation I am with Graves Disease and post RAI 2005, becoming very unwell about 5 year ago, and finding no help within the NHS.
It's a massive learning curve, but you are in the right place to read up, educate yourself and hopefully get your health back.
Thank you for your post, I feel more educated in 24 hours of being a member of this than the 6 years of hospital and doctors appointments! Never has anyone explained about supplements or suggested that the routine tests are inadequate, I have been made to feel like I’m imagining something that isn’t there and thinking is this just how my body is? I haven’t even got to menopause or old age yet and already I feel exhausted, I knew it wasn’t right and this is the first place I’ve been told it’s not ok to feel like this, it isn’t “normal” at all!!
The NHS work to guidelines, if they want to keep their life styles.
I found no continuity of care, this doesn't suit the patient, but it does suit the NHS, as they can't afford to become involved or have any sense of accountability to the individual patient, and with a bit of luck, may not ever have to see you again.
If you strip out the emotion you carry, you are a time slot, a 2.45 on the 12th.
Outpatient waiting times are target driven and not patient focused, the name of the game is to reduce waiting times, and meet the pre-set targets, but this doesn't necessarily mean any of this is in the patient's best interest.
I guess if you can afford to go private, and know who to go to, you may get some continuity of care.
I'm sorry if this reads as though I'm a little cynical, but I guess I am, having found no help from any NHS department in resolving any of my symptoms of post RAI treatment, thyroid eye disease, and the induced hypothyroidism along with my original diagnosis of Graves Disease ?
It wouldn't be so bad, if GP's and endocrinologists said NHS are not able to offer full indepth testing. That you need to test further your self privately
Testing might be done for coeliac if extremely lucky. But not single a word mentioned that the vast majority of Hashimoto's or Graves patients are gluten intolerant, not coeliac
Frequently never any mention of testing FT3 or testing antibodies.
Complete lack of understanding that gut and thyroid are closely linked
Just blind testing of TSH as the GOD of tests.
TSH is completely unreliable and was never ever intended as a stand alone test
Just an idea, but it's worth shopping around to find a good NHS GP - you can go to any doctor you like in your practice.
After years of an obstructive GP, I did this & now have a very helpful GP who does full testing when I visit her feeling unwell.
She even does full Thyroid testing (TSH / FT4 /FT3 / Thyroid Peroxidase, lab refuses TG Antibodies) & full Vitamin (Vit D / Vit B12 / Folate / Ferritin), Blood Count, Liver, Bone, Urea Panels.
She also listens, regularly giving patient half an hour of her time.
She's probably a rare breed, knows very little about Thyroid, but has offered me low dose of Thyroxine, as I have Hashi's & very debilitating symptoms, even though my TSH is only 3.9, so not even su-clinical hypo.
I won't consider taking it til my Vits & struggling Adrenals are optimal & I'm testing for D101 & D102 Gene Mutations.
Good luck & it's worth spending a lot of time on this forum gathering the wealth of info available here, I've learnt so much.
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