Taken my mom to GP he advised using SAD lamp for depression. She’s depressed crying in pain with oesteo throughout her spine, hips, knees and since April a dislodged jaw oesteo can not open mouth can not eat normal. I chased up dental hospital. In bed last 10 days with flu symptoms. Fatigue, chills,fever, dry cough, eyes sunken closed. Amoxicillin 5 days no effect. Listened to chest no sign of chest infection. Anyway a new locum GP agreed on ESR CRP thyroid blood tests but refusing rheumatology referral until results back. She’s riddled with osteoporosis osteoarthritis osteopenia disc bulge. Re occurrence of flu type symptoms like viral infections which previous says oh well it’s just the thyroid causing it. She has a low immune system nothing we can do! This has been going on for years without no real action. It’s like they don’t believe her as if she’s not having these viral symptoms and just give her more controlled drugs for osteo. Only diazepam is helping a little with the dislodged jaw. And I’m not impressed with GP thinking a SAD lamp will help. Can not change GP surgery either. Even A&E and dentist has been useless and waste of my time. They all not interested in exploring investigating. It’s just you’re old 67 yrs old wear and tear osteo fybromyalgia go away and die quietly. Any ideas would you agree ?
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I’m so sorry your mom is in pain, and so sorry she is being disregarded by your doctor. Few things are worse than being told were are making things up. Unfortunately, way more common than it should be and just know everyone here understands exactly what you are going through.
You mention thyroid in your post title, but you haven’t yet shared too many thyroid details in your post.
Some of the conditions you mention do have links to thyroid disorders. But probably some other things you mention may be unrelated. But it’s hard to say without some more info. It would be helpful if you could share your mom’s blood work. For thyroid, particularly TSH, Free T4 , Free T3 and B12, folate, ferritin, D3. Do you have this available?
This - for starters - would help this board give you better advice on at least the thyroid situation.
But I know others will reply and ask for other info and also give well rounded observations.
Yes she is hashimoto. I don’t have a copy of last years GP results. When I get time I can ask her surgery and get copy of results for the new tests she has on Thursday. I know off memory the TSH has became more normal to around 5 over the years and I think the T4 is usually low end around 16. She has folders of nhs paperwork I can go through again. I’m going to print an action plan. Study everyone’s advice. Print lists. If I find anything with results I will post on here if that’s ok with everyone. Thanks 🙏
hi I have something called Sjögren’s an autoimmune disorder. Symptoms are very similar to what you are describing plus severe dry eyes and dry mouth. It’s worth getting CRP, ANA and ENA blood tests done, GP can do. It’s common to have thyroid problems and other autoimmune disorders once you have one. My eyes were so dry optician wrote to GP and asked for me to have blood tests as she suspected I might have sjogrens. I have had symptoms for years, I also have severe osteoarthritis in every joint in my body. Pains in joints and terrrible fatigue are also symptoms . UK has a great support group if you Google sjogrens uk. It’s worth checking. Symptoms are often put down to other things I had it at least10 yrs before being diagnosed. Good luck.
Thank you for reading my long post. Yes mom suffers dry eyes and dry mouth but GP said it’s caused by epilim tabs. He prescribed salivix pastilles and hypromellose. I’ve suggested many times to GP about other auto immune disorders. She’s been in bed 10 days looks and feels like a corpse tbh. Managed to get her to GP yesterday. Blood test booked Thursday. Hopefully something will show abnormal for GP to act on it but don’t hold hope as he said ESR CRP if raised just indicates infection which don’t help diagnose and may not send to rheumatologist. I’ve had enough of their poor educated service just thinking mom is a hypochondriac.
print off list of symptoms on the Sjogrens website and tick off ones she has and take to gp. Also a great support group on FB Sjogrens uk. My CRP is always raised and it’s not always an infection. Short on this you could see a rheumatologist privately. If you are anywhere near Swindon is amazing. Hope you can convince gp to look at this
I just asked an experienced optician the one who my mom uses and the dispenser hasn’t heard of sjogrens. It’s crossed my mind before. I will do what you advise. Much appreciated 🙏
Thanks for raising our awareness of this. I'd never heard of it, but my sister's has been having some issues and this may well explain some of her symptoms.
I do feel for you and your mom. Doctors have a very limited arsenal of drugs that they use according to what pharma tells them. I found that natural supplements are wonderful in helping joint and muscle pains and general well being. These are magnesium glycinate (can be bought on internet) , calcium , Gingko biloba , turmeric (Cambridge product called Future You , Turmeric +Gold is particularly good and claims to rebuild cartilage), Allicin Max (extract of garlic). Since your mom has osteoporosis, she is likely to be on calcium supplements but it is important to have a right balance of calcium and magnesium. Gingko, turmeric, and Allicin max fight inflammation and are natural blood thinners, improving blood flow, helping ti deliver nutrients to the body. As for dosages, I just make sure I stay under the recommended max daily limit. With Gingko biloba, I take under 180 mcg daily split into 3 doses . And there vitamins and minerals of course : b complex, d, folate and ferritin that people on this forum remind us about. Vit d would be particularly important to your mom for good calcium absorption. By trial and error , you will be able to determine which supplements help most. I take them all, but make sure that calcium is taken 3-4 h away from all the other medication as it blocks their absorption . Once taken control, and seeing improvements, your mom should start feeling better, although it is a somewhat expensive route. Good luck!
I have tried her with magnesium in the past because I think some people with epilepsy are deficient but mom said caused diarrhoea. Can’t remember which one from Holland and Barrett. Tried her with selenium which I think did help raise the T4. Tried her with pro and prebiotics too. GP gives her calceous chew which probably is too low calcium and D3, he stopped the higher dose d3 Fultium caps. Has been taking various ones over last 10 years. I don’t give her multi vitamins because they contain iodine but sometimes she’s had H&B ones without iodine. Problem is she’s in negative mindset because of the years off pain and some neglect from GP. I have tried helping over many years. Mom will have a big flare up of infection and bone problems she will GP he don’t have an open mind or whatever. She waffles on with wrong symptoms/descriptions, the blood tests he chooses to do are basic and come back borderline or negative. Mom gives up doesn’t go back doesn’t make appointment. Then another 6 months or a year goes on she gets flare up or another bone or muscle’s problem. So start again just basic blood test or pain gel etc. I tell her write down symptoms chase things up but she doesn’t. She doesn’t always take the vitamins I buy. She suffered a displaced jaw since April. Went for dental assessment October and awaiting another referral assessment but she chose to not chase up. I chased it yesterday and got an appointment 3rd jan otherwise she’s just be waiting. Sorry but my mom is her own worst enemy. I can show her everyone’s help messages here buy her items suggested but she will be negative. I did end up talking to her like a child in waiting area yesterday told her let me discuss and speak with GP. I did at least get him to do some blood tests but he mentioned anti depressants which she does need and the regular GP said many times over last 4 years but drug interactions. And mom doesn’t go back for follow up as said. So not all GP fault. I’m lost. It’s autoimmune hypothyroidism, bone disease, painful lumps lipodema or something, greater tonchdiatrip hip thigh, viral type infections, osteo displaced jaw, dry eyes, mouth, ibs, depression anxiety plus some I may have forgotten. Too many things for GP to want to refer and deal with! First thing is get blood results and jaw appointment. Then this time I’m going to have to not give up!
Your advice is much appreciated and I will look into vitamins again 🙏
So sorry to hear about your troubles with mom. One thing she may not object to is extra virgin olive oik. Taking if with bread, about 1 tbsp twice a day should bring some relief from joint pain. It is strongly recommended by dr Sarah Brewer. I’m afraid, natural supplements therapy is likely to be the only option , because complexity of your moms’s case is beyond most doctors. I wish you ok all the best.
Thank you for being kind. Everyone is kind, understanding and compassionate. I have told her many times just to even take cod liver oil caps. She doesn’t eat bread because she struggles to swallow it and since April this dislodged jaw she can’t open mouth chew food when it’s locked flared up for weeks at a time. Living on shredded wheat, soup and yogurt. She’s never eaten too much junk food always healthy salads and veg. Don’t have sugar in coffee. Don’t drink fizzy pops. Don’t drink alcohol, don’t smoke. I cook with virgin oil. Mom uses veg oil for dad’s dinners. I could get her to try virgin oil with scrambled egg, pasta, maybe fish. She likes my cooking but dreading Xmas day having parents here because she will be depressed and won’t be able to have any meat but I could ask her to try salmon or cod which is soft easier to eat. Unless you guys can think of easy non chew recipes. Dad’s been trying to feed her but mom told me can’t even make a cuppa soup because it’s cold and lumpy lol I shouldn’t laugh. And I can’t be there daily cooking for her as I have a demanding long shift job. Not enough hours in the day to do everything unfortunately. Life’s complicated, mom’s conditions are complicated. Maybe eventually with everyone’s advice and detective work we may find a solution fingers crossed 🤞
It is essential that nutrients are tested before supplementing. Taking random supplements can be dangerous with things such as iron, calcium, vit D, and iodine. And, if one doesn't need them, they won't help!
We always recommend getting vit D, folate, B12 and ferritin tested for starters. But, if your mum is hypo she's probably also low in either zinc or copper, so these should also be tested.
Vit C and magnesium can be taken without testing, and testing these is not helpful. So, that would make a good starting point. But, when adding in other supplements, you have to know what you can take with what and when. We can help you with that if you give us results and ranges. All supplements should be taken at least two hours away from thyroid hormones, and leave four hours for some. But do ask on here before giving her anything.
Thank you. I will try to get a print out of results. Off memory the GP said he would test TSH CRP ESR vit D folic so whatever is missed I can follow up with GP. Everyone on here is more helpful than doctors, pharmacists and opticians from my experience. Our pharmacist knows nothing about immune disorders. They think we’re neurotic and dramatising. But until you’ve had debilitating illnesses they shouldn’t judge.
Just about everyone on here knows more about thyroid than doctors, pharmaciste and opticians!
Just testing TSH for thyroid is totally inadequate. She also needs FT4 and FT3. Otherwise, you can have no idea of thyroid status. TSH alone tells you ned to nothing. CRP and ESR are inflammation markers. They will tell you if she has inflammation somewhere in the body but not where. So, not very useful unless testing with ferritin - which is very important to test. Hers is probably very low. Vit D and folate also important, but not much point in testing folate without B12. Bit of a dummy this doctor, isn't he! (BTW, folic acid is the synthetic version of folate, so you can't really test for that - it doesn't appear in the body. )
Thank you for all links and advice. Will get print out of blood results and follow up with GP. Will print out a plan of action and ask for second opinion. She is hashimoto and was under QE Birmingham years ago. They did do T3 reverse T3 and cortisol and celiac tests years ago. They never found anymore immune disorders. After eventually getting TSH down to around 5 or 6 they discharged back to GP. Her results T4 T3 usually on the low or high side. At one point she had combined T4 Levo and T3 liothyronine which made not much difference Lio T3 was stopped. I’m hashimoto too and B12 and nodules but I don’t get these debilitating viral symptoms. I keep saying there must be something else going on. Quite often she looks like death. I can suggest and plan things for mom but she’s negative from the pain and GP ignorance.
I think I should print out everyone kind help and print out an action plan.
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).
Thank you for all the links. I will try to read and study them. Trying to get new laptop to link with printer to print things off. I’m not 100 % memory sure but I vaguely remember QE saying she’s ok now TSH improved and older women don’t have to be under 5mnol. I’m going to have to riffle through all nhs paperwork see what I can find. I remember she had hives itchy head red face reactions to T4 Levo tablets and she tried different brands. Don’t think she had reaction to T3 liothyronine. She didn’t take any meds for 2 years at one point because of the reactions. Even the QE didn’t test for binding allergies. In the end I suggested they try her on solution form so she now continues taking TEVA Levo. If I hadn’t done a little research reading I don’t think even the specialist would have listened to my mom. I had to go to appointment and intervene. Also remember they slowly increased the dose. She takes 175mcg. 50mcg bottles.
So more research reading for me lol another battle with doctors. The displaced jaw that’s meant to be caused by oesteo TMJ is big concern. I’m also going to do a GDPR medical record request from her dental surgery. I’m concerned that tooth extractions may have caused jaw displacement. Surely if they seen osteo they should do risk assessment. Or maybe it’s been missed. I can’t believe TMJ would displace and crack a jaw.
I’ve lots to do. But it’s nice that everyone here is helping me 🙏
Good evening Slow dragon and all members. Hoping everyone is good or as good as can be.
I have an update on my Moms blood test results. Been to GP surgery today. They wanted to do a telephone review of results but I’ve intervened and got a face to face appointment. GP says absolutely nothing wrong with the slightly abnormal results. Vitamin D is slightly low at 29. Given 50,000 unit 1, a week 6 week vit D capsule. I did challenge his opinion on the weak positive ANA his answer was 40% of people with positive ANA don’t have autoimmune diseases. My answer back was people with autoimmune diseases can also have negative ANA. I said mom’s symptoms are either Thyroiditis inflammation or some other disease and that she needs a Rheumatologist referral. He reluctantly agreed.
Mom gave me her clinic letters to which ENT have put possible Thyroiditis. Scan says diffuse coarse heterogeneous. Follow up in 6 months and for GP to do blood tests. This was last year last January so my Mom hasn’t bothered to tell me this or bother to chase her GP or ENT. So fact is if I don’t take control and intervene she just moans and suffers and don’t take any action. I’ve taken time out work Wednesday and today to deal with her medical problems. Pointed out to GP that her condition hasn’t been monitored by surgery and ENT he made excuses saying she’s had her annual blood tests. Surgery instructed to chase ENT follow up appointment because I’ve tried phoning Wednesday all afternoon and yesterday. Secretaries on leave nobody picking up. No email address.
I’m thinking is the autoimmune gland causing the hoarse voice loss of voice ? But this isn’t permanent her voice sounds more normal after she’s gotten over the viral flu type symptoms. This flare up of symptoms happens a lot with body joint pains and she spends more time ill in bed than up and about.
Also thinking the low Vitamin D symptoms the joint muscle pains are heightened pain because of her osteoporosis osteoarthritis. And maybe the physiotherapist should have requested a vitamin D test. He diagnosed greater trochanteric pain syndrome without a scan.
I’ve added some pics of results hoping you may have ideas for moving forward out this useless circle of suffering. I’m tired from reading letters, researching trying to piece the puzzle together. Felt like saying to GP why should I be doing hours and hours of studying doing their jobs for them.
All of the people on here donating their time reading and replying helping for free whilst well paid doctors do the bare minimum not even reading patient hospital letters not even actioning the letters. Not bothered to look at all the facts like ongoing symptoms, blood results, patterns of abnormal results. They don’t want to piece the puzzle together. They only help when results are ridiculously abnormal when it’s an obvious easy diagnosis when it’s too late to help someone. Challenges and puzzles means tests which means money spent out their budget pocket. It’s cheaper and easier for them to keep saying there’s nothing wrong, it’s wear and tear old age.
Another long rant 🤪 let it out on you is my type of therapy
Just testing TSH is useless….but all increasingly offered on NHS
She needs TSH, Ft4 and Ft3 tested together
TSH over 2 is too high for most people
No folate result ?
What vitamins does she normally take
Suggest you wait until she’s finished LOADING dose vitamin D
Then test FULL thyroid and vitamin levels
See how much vitamin D has improved
She will need ongoing daily vitamin D everyday
Test folate
And most importantly……TSH, Ft4 and Ft3
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Thank you I will try print out the links you sent me.
Got another result sheet.
I did say to GP vitamin D needs to be 80. She’s been prescribed for years calceous chew which is only low dose of D and calcium, so it’s obviously not high enough as a long term maintenance. It’s not even 1000 units. Oh he said he’s not had the FT4 and FT3 results back. Will chase up. Tried with magnesium a few years ago she said gave her upset stomach. Tried selenium so I try selenium and another brand of magnesium again. Tried her with pre and probiotic caps also said numerous times to try gluten free. She eats too much shredded wheat. Which makes me wonder if that’s not helping her inflammation thyroid.
B12 and ferritin is high and HB low. GP said not anaemic but I think he said he would do a full ferritin panel test. ESR raised he asked her where the inflammation is. She said everywhere, so I interrupted said her inflamed thyroid read the ENT letter.
She takes her Levo solution at bedtime away from dairy and other medications and she didn’t take it before blood test which was 11.30 am . And she probably didn’t eat before blood test.
The 50,000 vit D prescription label says stop taking calceous. I’m unsure if she needs combined vit D and calcium in 6 weeks after finishing it?
Also I would say take vit C to help her but internet advice says not to take vitamin C with high ferritin level.
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
She takes her Levo solution at bedtime away from dairy and other medications and she didn’t take it before blood test which was 11.30 am .
so last dose Levo was 36 hours before test which is too long …..but better than 12 hours
It won’t have affected TSH
TSH would have been higher if tested at 9am
Ideally
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I’ve read the Vitamin D guidelines. I think it varies slightly from different county guidelines. Unless I’m being stupid. Think the continued dose varies from 800 units up to 2000 units daily. Can’t find info about retesting guideline. Only I wanted to have facts to follow up with GP to know when it should be retested. I could also ask GP to test magnesium and if not get a private test to be on the safe side before giving her magnesium again.
I think I remember reading about people with epilepsy have magnesium deficiency.
Can’t seem to find the serum folate range results online if this 4.9 ug/L [3.1 - 20.5] is on the low end. I think it’s low and you think it’s low but try telling her GP….GP opinions would differ.
So the vitamin B with folate should be ok and balance all the B’s. It won’t affect the slight above B blood test result?
Strange she has some low end and slightly high vitamin results because she eats shredded wheat daily which is a source of vitamins and minerals. She has a banana some fruit daily, yogurt and soups. She doesn’t eat meat because she can’t chew with the inflammation lock jaw. Doesn’t eat junk foods, take aways or sugary treats. Her diet is better than mine. Drinks too much coffee she won’t drink green tea.
So we have a plan moving forward to get her vitamin D kept at an optimal level after 6 weeks and to get vitamin B folate today. Look into magnesium.
Only I wanted to have facts to follow up with GP to know when it should be retested. I could also ask GP to test magnesium and if not get a private test to be on the safe side before giving her magnesium again.
NHS will only fund testing vitamin D once every 2 years even if on vitamin D prescribed by GP
You will need to test privately via NHS easy postal kit vitamin D test £31
only add one vitamin supplement at a time ….then wait at least 10-14 days to assess before adding another
Vitamin levels when hypothyroid have little to do with how good or bad our diet is. Low stomach acid leads to poor nutrient absorption and low vitamin levels as direct result
Lower stomach acid also much more common in older people generally.
Unrecognised gluten intolerance with autoimmune thyroid disease (hashimoto’s) can also exacerbate poor nutrient levels
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
Test Folate, B12, ferritin and vitamin D once a year via Medichecks, Monitor My Health or Blue horizon (BH includes magnesium)
Thank you so much for all the useful links and advice. Printing everything off for mom to read. So it seems like we have to get facts from you experienced helpful people instead of GPs because some people’s conditions seem too complicated too time consuming. They don’t have time to discuss all these blood links or piece the puzzles together.
Thanks again will update on next blood results if they appear abnormal. 👍🙏
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
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).
She is hashimoto and was under QE Birmingham years ago. They did do T3 reverse T3 and cortisol and celiac tests years ago.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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
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
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Only problem is the other GP surgery is linked with partnership of 6 local surgeries who use ANIMA online app. Can not get appointments at all. It’s all online and my parents can not use internet can just about use a mobile to take a call. And I can’t report her GP surgery because they work closely with my workplace my boss. Catch 22
I’m in sort of the same predicament when it comes to elderly parent and EVERYTHING they need to do is being forced online its just ridiculous to say the least and a bummer you can’t get another doctor
Do you think it’s because our parents are too nice not pushy enough and don’t have some medical facts because they don’t read and research and have put their trust in GP’s ? They get fobbed off ?
She also needs to have optimal vit D, vit B12, folate and ferritin
Has she had a urine test?....UTIs are common as we age and can wreak havoc with health....the symptoms are not always clear cut.. I have ChronicUTI and when it flares I feel as if The Grim Reaper is lurking around the corner....just finishing a course of antibiotics after a debilitating flare.
Thank you for reading and advice. Weirdly she did recently have UTI blood in urine test which she gets sometimes. I’ve been there with mom when she looks like the grim reaper is about to take her and when the partner GP the older one has said nothing we can do it’s old age wear and tear. Tbh the 2 partner GPs and locums seem to be as useful as a chocolate tea pot. They do basic blood test say all normal can’t be anything else wrong it’s just your low immune system thyroid condition. I am going to follow up this time and demand all blood tests needed and if told no then ask for second opinion and complain. I will write a plan of action. Print off lists. It’s hard for you suffering reoccurring conditions. Hard for people with conditions not controlled and poorly understood by GP etc. This forum provides help, knowledge and support which is a life saver for some people. Thank you for reading and for everyone showing compassion 🙏
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