Hi all, I previously posted on behalf of my Mom. TSH, B12, folate and vitamin D below was taken 21/12/23. GP prescribed 50,000 unit 1 a week for 6 weeks vitamin D caps. So we see the ones called calceous 400 unit with calcium 1 twice a day did not maintain her level. So that could be one reason why she suffers muscle and joint pains. From your advise to buy vit D spray so I have done bought better you with K2.
GP said he had done FT3/FT4 but he hadn’t so we requested GP to do FT3/FT4 which is below and full iron panel. Taken 15/1/24.
she takes 175mcg Levo liquid daily. Done tests early morning empty stomach.
Over the years I’ve noticed the TSH has improved and this is the lowest it’s ever been. FT/3 FT4 has always been the lower end of the range.
Do anyone think we should ask GP to increase Levo to 200mcg daily ? To see if it increases the lower ranges?
Or wait for endocrinology?
Is it thyroid causing the symptoms or the low vit D or both ?
Previous weak ENA and ANA results but the panel tests were negative for lupus rheumatoid arthritis etc.
managed to get an outstanding ENT follow up the other week. Consultant didn’t know anything about optimal ranges but has written a summary of symptoms to refer for GP back to endocrinology and GP has prescribed dry mouth saliva spray and eyelid wipes. And also awaiting rheumatologist referral appointment.
it’s been a slow process of many years slow increase years ago because of allergies to something in the tablets. Endocrinology agreed to try liquid with slow dose increase. But now see the 175mcg Levo dose has finally got TSH much lower. Only problem is she suffers viral type symptoms which puts her in bed for 4 weeks sometimes more. It’s Hashimotos hypothyroidism. Ultrasound scan done 31/01/22. Diffuse coarse heterogeneous small sized thyroid gland without any focal lesions.
Just trying to get mom to feel more normal to help improve her pain improve her immune system to stop these regular flare ups. But GP’s don’t seem to understand about all the things you all know. If it’s in range on Levo it’s ok.
I put the results into the online converter see below.
Sorry it’s a long post again. If anyone has idea how to move forward with GP or hospital? Please 🙏
TSH 2.63 mIU/L (0.35 - 4.94) 49.7%
Free T4 (fT4) 13.3 pmol/L (9.0 - 19.0) 43.0%
Free T3 (fT3) 3.7 pmol/L (2.4 - 6.0) 36.1%
T4:T3 Ratio 3.595
Folate - Serum 4.9 ug/L (3.1 - 20.5) 10.3%
Vitamin B12 128 nmol/L (51.0 - 128.0) 100.0%
Vitamin D 29 nmol/L (50.1 - 220.0) -12.4%
Ferritin 148 ug/L (22.0 - 204.0) 69.2%
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Monalisa2023
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IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Thank you for super fast reply again. I posted last month and you and other administrators and forum members helped me. Bought the better you vit D k2 spray. Buying the B complex folate. Chased up the FT3/4 with GP.
So ask GP to increase Levo to 200mcg. If he refuses then show the printouts of all the useful facts you sent me. I printed lots out. I copied pasted below. And think this one should help if GP is stubborn.
According to the BMA’s booklet, "Understanding Thyroid Disorders", by Dr Anthony Toft, many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above. Dr Toft also stated in a 2010 issue of Pulse Magazine:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).
Trying to find out if it’s all thyroid symptom flare ups or vitamin deficiencies or osteoporosis or all combined making her life painful and miserable.
Thank you again 🙏 will ask mom to phone her surgery.
Yes she’s taking lansoprazole and naproxen since about April since the dental lock jaw severe displaced jaw. She takes her Levo liquid at night away from all meds and food and milk dairy. The thyroid caused high cholesterol for years and for the last couple of years she taken rosuvstatin 5mg. I seen dysliperdemia written on an old clinic letter. Epilim gastro 200mg since late 80’s. Never had any menopause meds. Severe osteoporosis osteoarthritis throughout body. Painful lipodemas nodes in arms and thighs. Multiple medical conditions and pain meds. But I do think the thyroid needs addressing because I feel bad for her but also I’m fed up of her moaning and me taking time off work and she just doesn’t seem to want to help herself. Also trying to help dad get GP to investigate dad’s purple cold feet problem. So many medical tasks going on this month. Mom lets doctors tell her it’s low immune system thyroid but no offer of increasing dose no investigations. I’ve told her she’s too soft and that this time I’m not messing around being fobbed off. We’re taking all the print out advice from you and asking for this thyroid problem to be dealt with and taken control. This disease somehow has control making people suffer. If we try the dose increase b complex folate see if any improvement to results and symptoms it could be thyroid problem solved and stable. If no blood result improvement back to GP or endo.
Oh she’s had to cancel the stomach endoscopy because of her lock jaw. Awaiting one of those barium liquid X-ray tests. If this shows up H.pylori. Low stomach acid ?
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Some of the vitamins are very low but others will be better placed to comment on them. I also don't know much about liquid thyroxines potency compared to tablet form but the free numbers are very low for someone who's taking 175mcg daily.I do know the tsh needs to be under one.I have had big improvements since adding a little T3 to my Levo but hopefully some of the admins will be along shortly to better advise.good luck.
Thank you for superfasf help. It’s taken years to get to 175mcg. If TSH is within red range below 5 they don’t seem to automatically increase dose. It’s moms fault too though she hasn’t asked hasn’t given GP all the print out facts about optimal levels etc. She doesn’t really help herself but constantly moans she’s freezing cold. Gets wiped out flat in bed with viral type symptoms. She lets doctors tell her it’s the thyroid disease causing it. Low immune system blah blah but don’t offer her any advice. If it’s within range it’s normal attitude. Doctors haven’t suggested raising the Levo. Have never commented about the low end FTS. So not much help from GPs. Then when I take control so far since December I’ve managed to get some outstanding hospital appointments sorted. ENT and dental. Awaiting rheumatologist. Managed to get GP and ENT to be open to suggestion of either the thyroid is causing her ill health or there is something else going on undiagnosed. But I can’t keep taking days out work. No time to deal with my own health.
So you think get GP to increase to 200mcg and a review blood retest. If no luck get endocrinology referral chased up. If after 200mcg dose the FT3/4 is still at lower end range then ask for T3 liothyronine combined therapy? Wish me luck lol
Info
She had Liothyronine on its own years ago for a year or so when she’d stopped taking her Levothyroxine tablets after allergic reactions. Tried all brands then hospital didn’t do allergy they prescribed liothyronine but off memory her bloods was still anbn out of range then they agreed to Levo liquid. Think they done pituitary blood test, celiac but don’t think they looked into conversion disorder. Can’t remember it all as it’s been going on since 2013 or before.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
As she’s already been tested for coeliac
Trying gluten free diet for 3-6 months.
If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Lipodema often responds well to dairy free diet too
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Yes it requires us as the patient to take control and it does require considerable will power to stick with it and not give in to temptation ….but results can be rewarding
Has had celiac blood test years ago. Doesn’t eat bread but not gluten free free diet. I have told her to try. Has bouts of stomach churning gurgling loud. Ibs symptoms. Given her pre/probiotics but she didn’t continue taking them. I take them and I think they help me.
I can’t see her trying dairy free. She likes natural yogurts. Likes eggs. Since April she hasn’t been able to chew many foods because of lock jaw severe pain so cereals, yogurt soup is her main food now. She won’t give up her shredded wheat lol i told her find some gluten free cereals. I tried GF a few years ago but I can’t do it. No self control with food.
Ok thank you we were going to try magnesium and the b complex but advised not to add all new vitamins at once to leave a 2 week gap. Might be better than keep taking diazepam and pregabalin. Thanks 🙏
I had problems with my jaw slipping out of place when my Levo dose was lowered unnecessarily (low TSH). My shoulder suffered a wrench at the same time. I strongly suspect a connection with the lowered dose which I took for three months. Dose is back up now and jaw and shoulder are on the mend but improving incredibly slowly.
Lots of posts on here about jaw problems related to undermedication.( but often hard to distinguish between undermedication and low vits/minerals)
Yes it’s hard to get evidence of all the symptoms connected to thyroid. The jaw problem could be extreme TMJ or ill fitting dentures or from too many tooth extractions. Or even the fact that doctors haven’t thought or offered to increase dose because it’s within range. Could also be the low vitamin D. She needs to take higher maintenance dose use the Spray not let the levels drop down again. I’ve told mom many times over the years to maintain her vitamin D but she just takes the 800u dose from GP which obviously hadn’t been helping all these years. She had a bad shoulder and next for months and months before the lock jaw problem. Tried private physio acupuncture. Maybe it’s all related. Who knows because it’s just one problem after another. Awaiting MRI scan of jaw follow up at dental hospital. The consultant was sure he couldn’t see any fractures on the initial X-ray. Mentioned the disc condyles worn out not functioning normal. To have another tooth extracted once lock jaw is better and new dentures. But maybe once Levo dose and vitamins are optimal she might notice improvement with her bone, joint muscle pains. I’ve also bought her seven seas joint caps glucosamine chrondian to try once the 50000units course complete instead of the GP 800 unit calceous tabs. Has anyone tried the seven seas joint caps ? Do they help with osteo joint pains ?
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