Been diagnosed as hypothyroid - really confused

Found this site yesterday and hope you will be more help than my doctor. Here is my history ... just turned 49 and until a year ago was pretty healthy never visiting the doctor and pretty much never taking any meds not even paracetamol/aspirin. At a routine sight test was told to see my doctor as changes behind my eye were discovered Oct 2014. Followed advice and b/t showed high cholesterol especially LDL levels and due to family history of heart disease (usually males) referred to specialist who did tests and put me on statins. Pretty much as soon as i started the statins I started to notice I fell asleep instantly (and I mean instantly) and within a few weeks started to gain weight and suffer from muscle cramps. By Feb 2015 I was starting to slow down and muscle ache was more noticeable so stopped the statins and saw my doctor. She prescribed another type of statin but also wanted to test my thyroid (something to do with the shape of my face) and advised I take co-enzyne 10. Thyroid test came back normal.

Persevered with statins until Nov 2015, but no improvement in muscles and continued to gain weight (this was put down to my age and being menopausal), and decided to stop statins and try and lower cholesterol with diet and exercise.

Beginning of this year I started to have a slightly hoarse voice, being a dog trainer for the past 15 years I put this down to overuse. And at the end of March the tingling started in my hands (which again i put down to overuse as i had been doing a lot of DIY), then my toes started to tingle a few weeks later.

Didn't bother to see a doctor as I had an appointment with my specialist beginning of May - after he lectured me about my cholesterol he asked what i took for my thyroid problem, when i said i'd had a test and my thyroid was normal he told me to see my doctor again. In the letter i received that was also sent to my doctor it said my TSH was 11.3 and under recommendations he wrote; GP to repeat thyroid function test in six weeks, consider medication if patient remains hyperthyroid - further in the letter he says borderline or hyperthyroid and that we are aware that hyperthyroidism may also give rise to weight gain and tiredness which have been some of the symptoms that this patient has had.

By mid May my voice was getting more and more hoarse and was starting to feel more tired but although i tried to see a doctor was told there was no point until the thyroid test had been repeated after 6 weeks.

Had the b/t, I fasted as both receptionists i spoke to seemed unsure if i had to fast or not. Rang for results to be told i couldn't have them as i needed to speak to a doctor and as no appointments were available I telephone appointment was made for a week later.

And it was in this phone call (23rd June)i was told I was hypothyroid (not hyperthyroid as specialist wrote) and i had to start 25 micrograms levothyroxine and would need to take them for the rest of my life, he then went on to tell me that on a positive note i would never have to pay for a prescription again. I did ask if it was something i could do with supplements he said no and if i didn't take the meds i could become seriously ill :( And all this came from a blood test nobody had actually seen me!!!

So been on them for nearly 3 weeks and no improvement in voice or tingling hands/toes. And since starting them Ive had itchy scalp and body, tickly cough, head cold, stye, conjunctivitis, aches everywhere and pretty much feel like crap (cant even remember the last time i had a cold/cough but must be 2-3 years ago).

And that brings me to here - found this site yesterday and after reading about T3 T4 and other results decided to pop down and get a print out of my results.

27 Feb 2015 Thyroid Function Tests

A. Normal, no action required Serum TSH level 1.19 mlU/L (0.27 - 4.2mlU/L

14 June 2016 Serum free T4 level

A. Normal, no action required 12.6 pmol/L (12.00-22.00pmol/L

14 June 2016 ! Thyroid Function Tests - C Give routine appointment ! Serum TSH Level 7.15 mlU/L 0.27 - 4.20mlU/L

Sorry its such a long post but wanted to include everything i remember to see if it could all be related. I keep noticing menopausal coming up time and time again in other posts could this not be a temp thing to do with that? Am i definitely hypothyroid? or borderline hyperthyroid as my specialist wrote? Is it just a coincidence that Ive felt so ill since taking the medication? And i guess what i really want to know is do i have to take this for the rest of my life or is there supplements life style changes that might resolve it instead.

I don't smoke or drink, am not on any other meds, I do take a couple of supplements in smoothies, supergreens, golden linseed, macca (my daughter works for a herbal shop and these were suggested to help with the change). I eat quite healthily, rice, veg, salads, lots of fish but do like the occasional treat, slice of cake or fish and chips. The one area I do have to work on is my stress levels - have been extremely stressed in the past few years but am working on that, or trying to ...

Any suggestions advice would be much appreciated - this is all new to me and don't think i'm going to get any answers from my doctors that's if i ever get an appointment to see one ... thank you for taking the time to read this :)

27 Replies

  • Welcome to the forum, Chellugsd.

    Having had TSH 11.23 and a repeat test of 7.15 there is no doubt that you are hypothyroid and require Levothyroxine replacement. 25mcg is a very conservative starting dose but may be appropriate if you have a history of heart disease. 25mcg is rarely very helpful but you should feel improvement when dose is increased.

    For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

    Most people will find symptoms resolve after their TSH drops to around 1.0 with FT4 in the upper range but symptoms can lag a couple of months behind good biochemistry.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you for the reply and advise. Yes Ive been told to have another test in 6 weeks and will fast as i think they want to keep an eye on my cholesterol levels as well. Again thank you for your reply :)

  • Chellegsd,

    High cholesterol is common in hypothyroidism. As your thyroid levels improve you should find that cholesterol comes down.

  • Oh I hope that happens will save me arguing with the specialist in November about trying another type of statin ;)

  • Chellegsd,

    There is a considerable anti stance with respect to hypothyroid patients taking statins on this forum. You might want to read Dr. Malcolm Kendrick's blogs on cholesterol and type "Statins" into the Search Thyroid UK box to read posts on the subject.

  • Will do Clutter and thank you for taking the time to offer advice. Going to take a while to absorb it all but feeling very lucky I came across this group :)

  • It is a big learning curve as doctors seem to be the least knowledgeable if levothyroxine doesn't make us well.

    Before the blood tests were introduced, we were diagnosed upon clinical symptoms alone, high cholesterol, unexplained weight gain, hoarse voice (I first went to GP with hoarseness and was told there was nothing wrong - how wrong he was and I remained undiagnosed, something like yourself for a long, long time).

    There are about 300 clinical symptoms and we don't expect them to know all of them, but they have been told only to take notice of the TSH therefore they are not knowledgeable about any symptoms.

    They are too handy to prescribe statins rather than thyroid hormones and Clutter has explained it well along with Dr Kendrick.

  • There was a study done on women around menopausal age taking statins and they found something like 75-80% ended up with either pre diabettes or diabettes.

    Statins caused my Mum kidney failure, she nearly died from it, kidney failure is a listed side effect of statins.

    My husband refused to take a prescribed statin.

  • My shepherd tore his cruciate ligament end of last year and had a tplo op (leg broken and plated) he is raw fed and wanted a supplement that was natural so started to make golden paste (turmeric/black pepper/coconut oil) Really impressed with how well he did on it I started to take a spoonful myself - haven't had any for a while but might start it again if it's ok to take with thyroid meds? Thanks for reminding me :)

  • If you supplement I always allow 4 hours between taking hormones and supplements so that nothing interferes with their uptake.

  • I've been on NDT for 5 years eat no dairy gluten soy and take curacumin my cholesterol has not changed despite eating mainly veggies and high quality protein as my diet; plus exercise daily... It seems like a fine line... I gave up sugar two years ago no booze.. Despite all the lifestyle changes optimum b, d, iron I do not seem to get better. Am now trying Ldn with huge improvements in myalgia... My antitpo so have dropped significantly so maybe it's a matter of time. Grateful to be fogging the mirror..,

  • chellegsd Clutter has explained about you being hypothyroid (by the way, just a thought, the specialist may not have got it wrong, the secretary may have made a typo or misheard and put hypERthyroid instead of hypOthyroid, if it was the specialist then he should be shot!)

    I just wanted to add that the tingling could be low level of B12. It would be a good idea to see your GP and say that you understand that optimal levels of B12, Vit D, folate and ferritin are necessary for thyroid hormone to work properly and ask him to carry out these tests. When you get the results, make a new post with the test result (include the reference ranges) and members can advise if there are any deficiencies and what supplements to take.

  • Hadn't thought of that but they certainly sound similar so probably very easy to do. Thank you for the advice concerning the tingling will try and see the doctor and ask for those tests. Nice profile pic btw :D

  • Ha ha, pooch had been snuffling around in the autumn leaves and some had got stuck :) , shame the picture isn't bigger to see properly.

    If your GP refuses the tests, they can be done privately so just ask for details.

  • chellegsd Forgot to say, I used to be a secretary and Dictaphones took over from shorthand. Some of the tapes I had to listen to were shocking, I swear anyone using them should go on a course and learn how to dictate clearly!

  • Annonymous21 I totally agree that the specialist should have read the letter, but I do sometimes wonder if they go out without them reading through them. I've had unsigned letters so it does make me wonder.

  • Even 30 years ago - people with raised cholesterol had their thyroids treated :-)

    Look at No 5 of the causes of raised cholesterol in the above link ! When you are adequately treated the cholesterol will be lower. Anyway we need cholesterol for all our hormones to function and more importantly our brain is over 25% made from cholesterol I have read. So with over 7 million people in the UK on Statins is it any wonder that Alzheimers and Dementia is on the rise.

    Statins also blocks VitK2 as well as CoQ10. VitK2 directs calcium away from the bloodstream into the bones. There is research published last year that Statins actually cause heart problems due to calcium causing a build up in the arteries. You couldn't make it up !

    You are in the right place - so now you need all the other testing done - especially B12. B12 deficiency is a neurological condition and not a Vitamin deficiency. Look at my earlier post today about Sally Pacholok and the movie - Could it Be B12 ? There is a book by the same name.

    You can also see the movie in the above link - under the heading Films - also other good videos.

    I would also get those thyroid anti-bodies tested - Anti-TPO and Anti-Tg - in case you have Hashimotos.

    I am not a medic - but a Hashimotos girl with other auto-immune issues and a B12 problem :-)

  • Thank you for your reply. I must admit I was horrified when I started to research statins and put together with my family history (most males on statins, then had high blood pressure so more meds and most are now diabetic so another lot of meds), I really didn't want to go down that path :(

    I will also check out your earlier post on B12 :) Think my doctor is going to be horrified by all the tests I will be requesting ... Thanks again

  • Let him be horrified - you need to get to the ROOT cause of your conditions and not be treated like your family who are only having their symptoms treated. Statins can cause diabetes and of course raised blood pressure is a symptom and not a condition - a symptom of something else going on in the body - Hypo/Hyper Thyroid problems ??

    Dr Kendrick wrote the book the Cholesterol Con - please do look at his website that I have posted above and read his blogs. He spoke at the Thyroid UK Conference and also the B12 Conference last year.

    If you type Statins into the Search Thyroid UK box at the top of the page you will be amazed how many times it has been discussed here.

  • Interesting to read about leaving several hours between taking levo and vit supplements. I take the levo half an hour before eating breakfast, but then down all my vitamins with that, so may try leaving those until lunchtime.

    chellegsd, I have just started a thread about my tingly legs on here and have only just discovered I am hypo too, so sympathise with you. BTW I was also given statins once a few years back for my inherited high cholesterol but gave it up pretty quickly after it gave me a lot of muscle pains.

  • Thanx Milly will check out your thread :) After all the advice I've been given by this group am starting to feel there is a light at the end of the tunnel which isn't an express train heading my way :)

    Sorry to hear you've been recently diagnosed hypo too but looks like we've come to the right place for advice :)

  • Not sure if this is the right way to link to my post but here goes

  • Thanks Milly the link worked. Will have a proper read later.

  • Sounds like I got off lightly - so very sorry to hear the problems you've had from statins. I was also put on lipitor 40mg but only stayed on them for a few months as my muscles seemed to harden and feel very heavy I also woke at night with painful cramps. Was then changed to Crestor 10mg these I persevered with for 7 months but the cramps continued so came off them too.

    My specialist who I will see again in November wants me to try Ezetimibe next but I'd already decided not to do this even before being diagnosed hypothyroid. Am hoping as a few people have commented further up that now Im on thyroid meds this will lower my cholesterol.

    I tend to avoid gluten anyway but thanks for the heads up about soy, didn't know that.

  • My levo tablets information sheet (I am in Spain so the Spanish version) says to avoid soya products when taking the tablets. I have tried going onto soy in the past when I was first menopausal, but they also upset my stomach so I avoid it anyway. I wanted to check that grapefruit didn't affect levo like it does statins, but there was no mention of that in the leaflet.

  • Hi - my downward health spiral (and Doctors' misdiagnosis) started in almost exactly the same way as you have experienced! Optician noticed change in my eyes and recommended that I have my cholesterol checked, Cholesterol checked - told no action need as only slightly elevated (5+ I think from memory). Tickly cough for over six months - told it was just a virus that was lingering. Eventually referred to ENT specialist and given Omprezole as tickly cough had progressed into acid reflux. Still suffering so referred to Gastroenterologist - given more Omeprezole then a gastroentroscopy which revealed that I didn't have abnormally high levels of stomach acid. He sounded quite perplexed when he read out the results but never thought of having my thyroid tested (I have since found out that low stomach acid is a common symptom for hypothyroidism). Meanwhile food intolerances got really bad with migraines for days. Tested for allergies and NOTHING came up. Lots of viral infections as well so the Doctor ordered Full Blood Count. All the while I was periodically having my temperature & pulse tested. All 'normal' but when I started keeping a log of my basal temperature it fluctuated between 35 & 36 degrees (way too low). The doctors NEVER considered thyroid problems despite many visits & me feeling awful! I finally found out that I had a thyroid problem completely by chance as I was considering IVF and was told by the clinic that I had to get my thyroid checked and that my TSH level should be under 2. I was pretty shocked to see that it was 6.32 but still the doctor didn't want to do anything about it until I said that I was considering IVF.

    Sorry to bore you all with these excruciating details but just wanted to say that now - four months down the line I am feeling so much better - thanks mostly to this website and the advice I have picked up.

    Hope you feel better soon!

  • Thank you for sharing and no it didn't bore me. Just reading everyone's personal experiences has made me feel less isolated and all the advice has made me feel proactive at trying to get on top of the symptoms rather than be in denial about the diagnosis. And it is so good to hear you are feeling better :)

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