Facing a brick wall!

Facing a brick wall!

I am new here.

I need advice on where I can consult a sympathetic endocrinologist.

I have been diagnosed with hypothyroidism for the last 15 years. I still have hypothyroid symptoms but can only get prescribed levothyroxine 200mg/day.

My GP admits she is not experienced enough to manage and was referred to local hospital to be told T3 was too expensive to prescribe!! And according to her my bloods are " fine"

Now find I have hypertension to add to my list of symptoms.

I am over weight 11 st 5'2" had a blood test about 6 months ago with showed I was pre diabetic. Cant shift the weight though. I have been gluten free for nearly a year , cut back on the sugar, and gave up smoking 9 weeks ago. And now find I am Hypertensive.

I have carpel tunnel syndrome in both hands / arms shoulders, which disrupts my sleep too. Have had to have wedding ring altered two sizes up so I can wear the thing, as my fingers are swollen.

Feeling really down now as I hoped the referral to Endo would set me on the right track, but it seems I am looking in to a brick wall, and a slow decline with my health.

If anyone has any suggestions of a consultant in Scotland or Northern England who could help, I would be grateful.

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  • 5coot63 Do you have any recent thyroid test results (with reference ranges) to share? If so, please post them for members to comment.

    Have you had the following tested:

    Vit D

    B12

    Folate

    Ferritin

    Also TPO and TG thyroid antibodies.

    If so, post those also, if not ask for them to be tested, or test them privately (we can point you in the right direction for home fingerprick tests).

    We should then get some clues as to why 200mcg Levo daily doesn't seem to be working for you. You could have a conversion problem, where T4 (the inactive pro-hormone) is not converting to T3 (the active hormone that every cell in our body needs). Or you could have low nutrients levels which means that thyroid hormone can't work properly. You could also possibly have but issues affecting absorption.

    Do you take any other medication? Some can affect absorption of thyroid meds.

  • Don't take any other medication other than HBP med. where do I get home testing kits?

  • 5coot63

    Blue Horizon bluehorizonmedicals.co.uk/T...

    Medichecks medichecks.com/thyroid-func...

    Both of these are the same test at the same price, check to see if either have any offers if you want to order.

    How to collect the sample - click on Paul's photo - bluehorizonmedicals.co.uk/F...

    The amount of blood needed is less than 1ml.

    Google for interactions between Levo and your particular blood pressure medication.

    Take your BP medication 2 hours away from your Levo.

    Do you take your Levo on an empty stomach, one hour before or two hours after food?

    When having thyroid blood tests, always book the first appointment of the morning, fast overnight (you can have water), and leave off Levo for 24 hours. This gives continuity of conditions so you can accurately compare results, also, importantly, it gives the highest possible TSH which is needed to avoid a reduction in dose or when looking for an increase.

  • I really sympathise - can you post your recent bloods so we can help tell if they are normal or low in range ?

    under treatment can cause high blood pressure but it can also be lifestyle ... if you are still symptomatic you really need to focus on your results to optimise your chances .

    If you are pre diabetic you still have a good chance of avoiding medication but you need to do something a little drastic - I would suggest a low carb regime ( under 1000 kcal a day ) or a low carb regime and a 5 plus 2 approach ... if you could shift a stone that would make a massive difference and help your blood pressure . That would return you to a near 'normal' weight.

    Also - obvious - you need to go salt free and put more potassium and magnesium based foods in your diet - Potassium, a mineral, works by protecting blood vessels from oxidative damage and keeps vessel walls from thickening. Potassium is a chemical which helps to lower blood pressure by balancing out the negative effects of salt. One study found significant decreases in both systolic and diastolic blood pressure among people with hypertension after taking a magnesium supplement for just 12 weeks. Google foods high in these two minerals.

    Good foods for High BP are :

    leafy greens, berries, beetroot, yogurt , bananas, salmon , seeds , garlic, soyabeans, skimmed milk ... Reduce all forms of intake of fat , sodium and alcohol.

    ( I am not medically trained but am a qualified Nutritionist ).

    good luck x

  • Soya is best 100% totally avoided when taking Levo

    See The Thyroid Pharmacist website

    Even soya lecithin which is in most chocolate & hidden in masses of other stuff too

  • I didn't know that - thanks x

  • I have found noticeable difference. Had avoided soya for years, but ignored soya lecithin (didn't think I could survive with out chocolate)

    Cutting chocolate has proved surprisingly easy (having none is easier than a meagre ration) .....good for waistline too.

    It might of course just be that by avoiding more sweet stuff that sugar level stays more constant & lower level.

    Either way I got positive result

  • That's really good to know - its all worth trying !

  • This is right!!

  • agree .. soya and any brassicas vegetables work against the thyroid

  • I'm afraid to say this, but that is very, very bad advice. The last thing you should do is reduce fat and salt. The body needs both. The adrenals, especially, need salt. And the last thing a hypo needs to do is weaken her adrenals!

    1000 cals/day is not enough for a hypo. We need calories to convert. A low calorie diet such as that, will not help her lose weight, but will probably make her put more on.

    SlowDragon has mentioned soya being bad for hypos, but in fact, it's bad for just about everybody unless it's fermented.

    The high blood pressure is more than likely due to being hypo - in any case, high blood pressure is rarely due to too much salt! That's a very old fashioned view, and was discredited a long time ago. So, if the blood pressure is due to being hypo, what is the point of giving dietary advice that is going to make people even more hypo, like cutting calories and eating soy?

  • how many grams of salt do you need a day for optimal adrenal health ? There is enough salt in all our foods without adding extra in my opinion ! Can you point me to any info that can better educate me in this area as had no idea that my view on added salt intake was old fashioned .... ??

    To be honest - I merely said reduce fat intake & alcohol as they are dense in calories compared to other foods ... of course we need fats but they can come form healthy sources like salmon , seeds etc ...

    [I didn't know about the soya issue so will bank that knowledge for sure... ]

    The short term low calorie suggestion was to avoid diabetic medication - How many calories do we need to convert then - what's the optimal level ?

    Apologies for my post - please ignore all advice - and I hope you feel well soon

  • A hypo of average height needs about 2000 cals a day. But it isn't about calories. I'm not saying anything about alcohol, but the fact that fat is so high in calories, and we need GOOD fat (agreed on that point) just goes to show what a nonsense calorie-counting is.

    I didn't know that calories had anything to do with diabetes, that's a new one on me. But, given the link between hypo and diabetes, I would have thought it was better to have good levels of thyroid hormone to avoid diabetic medication. Eating fat doesn't cause diabetes, and lowering fat doesn't cure it.

    When you say 'There is enough salt in all our foods without adding extra in my opinion !' what sort of food are you talking about? Processed food? We always advise people to avoid processed food and cook everything from scratch - there are too many chemicals and things added to any sort of processed food to be good for us. And, of course, they use processed salt. (And processed fat.) We recommend sea salt or pink Himalayan salt, not table salt, which is obviously bad. I don't know about grams, I've never weighed it, but the Adrenal Cocktail contains half a teaspoon of good salt. You can google that. :)

  • healthunlocked.com/thyroidu...

    holisticsquid.com/salt-esse...

    thehealthyhomeeconomist.com...

    If you have a look on my profile, at the other articles I've posted, you'll find a lot about soy, if you're interested.

  • Excessive calorie intake has everything to do with diabetes 11 - you only need to eat an excess of 200 calories day to gain a stone in a year ... most people over 40 eat too many calories ( if only by just a few hundred but it all adds up over time ) mainly because the myth touted is that we need 2000 - We don't .... based on age , height, sex, and activity levels we often need way less - My Basel Metabolic Rate BMR level is only about 1650 and I am 5 .. 7 and relatively active ! That's the amount I can eat before gaining weight. And that's ignoring being Hypo ...

    Reducing calories whilst maintaining all nutrients ( vitamins and minerals ) is usually safe and advisable for anyone pre diabetic - where is the EVIDENCE that this is not good advice for thyroid sufferers ?

    I was hoping for the EVIDENCE about my low salt advice being 'old fashioned ' ... I am always up for learning FACTS - any high blood pressure sufferer should definitely reduce sodium intake to 3 g salt a day - for you to suggest otherwise is possibly questionable advice.

    As I say - I'm not a doctor just a Nutritionist .... all conditions that overlay have to be balanced out with an optimal eating and lifestyle plan to best assist every condition.

  • Exactly, you're ignoring being hypo. Being hypo changes everything. And hypo weight gain has nothing to do with calories because it isn't even fat.

  • what is it then if its not fat ?

    I believed that the weight gain was due to the inability to metabolise at a 'good rate' = the body would then treat are normal intake of calories as taking on too many - as in all other cases of excess calories this turns to fat ! absolutely not fair I agree but its still fat ? ( isn't it ?)

  • You don't want to cut out fat- that is terrible for brain health and vital organ function. We need good fat and a balance between types of fat. Some do better on certain types of fat than others...If you haven't already, you need to cut out ALL processed foods...and probably dairy. Hypo and dairy do not mix and there is loads of info out there of how dairy disrupts system and causes weight gain. When i cut out dairy (with exception of ghee), I lose weight and feel much better...and if you are a woman over 35..dairy is even worse for you. Also, you are most likely insulin resistant (which can cause pre-diabetes). You need to know you various cholesterol levels (for example- my integrative GP tells me i need more fat..eggs, steak, butter, avacado..because my cholesterol levels are out of balance..but my A1C is slightly elevated...(insulin resistance). One website that I find very informative is- Dr. Chris Kresser has loads on his website for hypo. If you haven't gone to his site, I suggest you do that.

  • Mucin.

    My apologies to Scoot63 for hi-jacking her thread.

  • Too little salt causes fluid retention, because the body needs salt, and hangs on to as much as possible. But, when water is excreted, it takes salt with it. So, the body hangs on to water, to retain the salt...

  • seriously - not good advice for those with high BP

    bloodpressureuk.org/microsi...

  • High blood pressure is a symptom, not a disease. It's a sign that something else is wrong with the body - in the case of hypos with high blood pressure, it is more than likely due to low T3.

    With low T3, over time, the blood vessels become less supple, so the pressure needs to be higher to get blood round the body. High blood pressure is rarely due to salt in-take. As I said, that was disproved a long time ago.

  • pls supply the evidence on that - ( second time I've asked you for the evidence on my 'old fashioned ways') I don't doubt that it is a symptom ( I developed it too as a result of under treatment) but once you've got it - it does not disappear and you CANNOT say that you must not curb salt intake when you have high BP - Have you read the extract I sent you ... I NEVER ever said all BP was caused by salt intake - what I did say is that once you have it you MUST curb salt intake ...

    As previously stated once Hypo and have developed other issues ( BP, Cholestroel, etc ) you have to treat all the conditions with adjusted diet - primarily getting the T3 level right but that itself does not undo other conditions that have developed as a result of being Hypo.

  • Oh, I'm so sorry I didn't jump to attention the first time you asked! But, when you have been reading on the subject of hypo for as many years as I have, you pick up things all over the place. It's impossible to remember exactly where you read what. I have given up bookmarking articles and blogs because it was becoming unmanageable, and I could no-longer find anything. So, I don't have much in the way of links to give you.

    adrenalfatigue.org/eating-r...

    scientificamerican.com/arti...

    Surely, as a professional, it is part of your job to keep up with the latest research - and do your own research.

    Actually, things like blood pressure and cholesterol do right themselves when you get your T3 optimised. I never had high cholesterol, but I did have high blood pressure, now I don't. And I certainly haven't lowered my salt intake, if anything, I've increased it to support my adrenals - which, incidentally, have also improved.

    Once again, my apologies to Scoot63 for hi-jacking her thread. This will be my last comment. :)

  • As a professional and qualified - I really do take all my research seriously - I pressed you for info a second time because I really dispute your advice on salt intake and BP ... you have your view I'll share one last time the view of the Blood Pressure UK advice one last time

    bloodpressureuk.org/BloodPr...

    We are clearly at odds on this ...

    lets call it a day ...

    For the record I totally respect much of your advice on here but not on this ... over and out !

  • sorry Scoot63 - but feel really strongly about this so have to challenge on this particular issue ...

    hope you feel well soon ...

  • 800 calories a day for 12 nightmare months = 12 pounds weight gain... just saying x

  • were you on the right meds at the time of attempted weight loss ?

    that level of low cal for that long really not to be recc .. iit's so tough - I know , I gained 2 stone from hypo - but based on help from this forum people need to get their meds right for them and then I do think weight loss is possible and even advisable if overweight to avoid added complications from being Hypo ... if meds are right surely that means we start to metabolise normally again ?

  • Not necessarily. You need to have optimal levels in vitamins and minerals also so your body functions smoothly. And a good diet is #1.

    Pills aren't the key to weight loss. Yes of course it's harder when you're hypo. Dedication is the key. Our western diets are truly atrocious, and just because some people are skinny while on these diets doesn't equate to health. Gluten should be avoided, soy should be avoided (some say fermented is ok), dairy shouldn't be a huge part of any diet. Eating lots of vegetables is super important. Too many portions of fruit is counter productive as it raises glucose.

    I lost 50 lbs by not buying any easy cook meals, for an entire year (and to this day) I cooked each meal I ate from scratch, no snacks, no sugary foods, no garbage (any time I cheated I gained weight instantly). Nothing that came in a can or pre-made in a box. Nothing with a million chemical ingredients. I could keep going but the point is I ate only real food. The way our grandparents and great grandparents used to eat.

    I was aiming to lose 10-20 lbs as I felt that's how much I've put on over the years, was surprised that my body lost 50. I became leaner than I was at 15, and in fact never in my life thought my body could be this way. Now I'm starting to exercise since I've avoided that aspect of it all.

    Western diets are made to ruin metabolism, I wonder how many our us would actually be hypo if we never ate garbage in our lives.

  • Controlled my weight successfully for 27 years before it started climbing uncontrollably. My usual action if gained more than 2lb was 1000 cals till gone. Everything I knew about sensible dieting screamed no at dropping to 800 but everything I knew said I couldn't be gaining weight on my calorie intake. Very long story short I had been diagnosed with fibromyalgia and this was in 2001. Odd occasion I have successfully lost some but soon start gain on same calories so go back to 1500 caps till next attempt . Self medicating with Thyroid s for 18 months but still not found right dosage, overshot at one point early on and lost 9lbs. Point I was trying to make was telling someone with hypothyroidism to eat less and lose weight is pure ignorance and hurtfully insulting.

    Just saying xxx

  • Hi Cazza yes it is right about Soya to be avoided for us. Also healthy good fats, leafy veg and good quality meat is more the diet we need- more like a paleo diet. So only use cocunut/ olive/ hemp! Dr Sarah Myehill, Dr Peatfield and Dr Isabella Wentz all have books which give good biochem background to why. My Endo - who us prescribing T3 - lists 9 specific foods to avoid including bananas. I dont know if it works yet cos just stated . I know its a bit of a mine field but maybe take a look at the specifics of our condition and diets

  • Cazza,

    I cook from scratch 90% of the time. So your suggestion of fat elimination would not be difficult for me to adopt. And I will now try to make that 100% of the time for myself and see how I get on.

    For the last year I have tried as much as is possible to be Gluten free, and do feel a decline in the wind production department!! Just cant belive I havent lost any other weight.

    Will try the magnesium supplement too.

    The foods you list are currently in my diet but now you point them out as beneficial I will be more focused on what I am eating and why.

    Thank you fo your advice.

  • Keep in healthy fats from Omega 3 sources ( salmon , Mackeral , seeds) - Avoid soy ( at least never eat near meds ) ... Honestly - unless your meds and ranges are optimal you WONT loose weight - believe me - I eat VERY clean and it was not until my doc agreed finally - after advice from here on ranges - that she upped my meds ... I have stuck with my 1200 calorie diet ( I can't eat more or would gain at about 1 lb a week ) and have lost 4.5 lbs in 2 weeks - THERE IS HOPE ! If you want any other dietary advice PM me.

    Pls try and be militant about the lactose / Gluten elimination for at least 2-4 weeks and see how you go.

    Basically is your TSH < 1 and are your T3 and T4 is the upper range - until they are you probably wont feel well !

    see this link for other ways to max Levo uptake :

    btf-thyroid.org/information...

  • New research by several research teams as shown that T3 added to T4 is beneficial for many patients.

    I am sorry they've restricted you to 200mcg of levo but not reduced it and added some T3.

    Levothyroxine is T4 and is inactive. It has to convert to T3. T3 is the only active hormone required in our receptor cells and they have to have sufficient to raise our metabolism, relieve our symptoms and make us feel well.

    If you put up a new post asking for a Private Message to be sent to you of a source for T3. You should get some responses.

    Carpal Tunnel, unexplained weight gain and on an on and I'll give a list of symptoms.

    thyroiduk.org.uk/tuk/testin...

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • Shaws,

    Thank you. From my understanding of the condition this is what I think too. At least it makes the most sense to me.

    In mechanical terms I feel like im running on only two cylinders and my carburetta is flooded!M

  • Its like pouring petrol into a car but never adding oil to the engine, eventually things start seizing up !

  • You always bring so much well considered wisedom thanks Shaw

  • I have dug out my print out of biochem tests taken last september.

    Free T 4 18.7

    Tsh 2.15

    Haemoglobin Alc 42

    Thats all that was tested that time. I have report from earlier but will those be pertinent to today being nearly a year old. Can post if you think it would help.

  • i would suggest that smoking has upset your whole body especially stomach and absorption and will mosrt certainly have furthur trashed every vitamin level in your body especially vit C

    Cigarettes contain cadmium amongst other poisons and all of that screws up the body so nothing works correctly

  • There's been no mention of smoking in this post

    But yes research (and many with personal experience) find smoking, or especially giving up can be a Hashimotos trigger

    thyroidpharmacist.com/artic...

  • Slow dragon you need to go back to top of the thread

    5coot63 said they gave up smoking 9 weeks ago

  • Ohh sorry missed that important small sentence about recently stopping smoking

    thyroid-info.com/articles/s...

    Pretty sure my Hashimotos started soon after stopping smoking (many years ago)

  • My daughter and all 4 grandaughters have Hashis and have never smoked or been part of a smoking household

  • cigarettes where mentioned in the original post

  • Thanks to all for your comments advice and recommendations. It is interesting and not surprising to me that none of you have recommended an endo near me. I hadsuspected that this may be the case, when I asked the question.

  • Sorry that I can't contribute to an endo recommendation in the UK as I have just recently moved to UK from the US. That said, I went to supposedly some of the best endos on the east coast in the US and they were/are utterly useless. Most endos only look at your thyroid in an isolated instance..when in reality, most hypo people have hashi markers..and regardless needs to be addressed as an autoimmune disease..which makes your thyroid a victim. I only received good medical treatment that was in-line with actually healing my body and getting my thyroid more under control is when 1- I took charge of my own health and questions and researched EVERYTHING my endo said or prescribed (which this site seems quite good for support and bigger picture thinking), 2- when I found and integrative MD. There should be good ones in the UK (I haven't looked yet) as my US doctor uses labs over in here (UK) and refers to colleagues here as well. I also found a fantastic naturopathic practitioner whom did loads of testing (gut bacteria, allergies, full blood work-ups)..it cost me a good deal of money, but it helped narrow down how I needed to address my autoimmune condition and what to not focus on as much (i.e. I already eat paleo..and candida wasn't much of an issue for me, but adrenals are, and larger hormone imbalance..insulin resistance..etc). Lastly, I had and amazing Traditional Chinese Medicine doctor who did herbs and acupuncture- which also helped immensely and my integrated worked in conjunction with him(find a good TCM)...and the biggest thing is the integrative (or a good one) should want to medicate LAST and have you on the lowest possible dose of meds and knows how to look at various options for drug treatment (different T4 and T3 supplementation). Also- just for the benefit of the group (since i am new) I started with Graves and now have gone to the other side and have Hashi markers...So I have run the line with thyroid...and for the most part, I am doing pretty good..but it's daily work..and it starts with healing your entire system..and it takes a long time. Bottom line- find a good practitioner who looks at the system not the organ or in isolation.

  • Well I cant blame stopping smoking for triggering my thyroid problem.

  • 5coot63,

    Smoking may have masked a thyroid condition as smoking lowers TSH.

  • Having recently given up smoking (weeks or months, usually) before diagnosis is very commonly reported here.

    I suspect that sometimes people give up because they are not feeling as well as they feel they should - but end up getting worse as it stops masking hypothyroidism.

  • That's so strange I didn't know that! I gave up smoking 6 months before diagnosis! I think you're right, it was because I wasn't feeling good and attributed the smoking to my throat fullness and other problems. I actually thought I was going to be diagnosed with throat cancer and ended up with Hashi's, to be honest I was actually relieved.

  • Hey Clutter do you have a link that shows this information? I think my sister is hypo but her results keep coming back ok, doctors keep her on 50mcg Levo for the past year and her TSH is around 1. But she's always falling asleep everywhere she goes, she's moody and depressed. She smokes like a chimney and I'm wondering if that's possibly skewing her results.

    Recently her husband had to go to emergency with lung problems and they're both now considering quitting. If I could show her some information that TSH is lowered by smoking, it may really convince her to get her act together quicker, and maybe will help with her thyroid treatment if her TSH results are higher on the next test.

  • dang,

    Although smoking may decrease TSH quitting smoking may increase likelihood of developing Hashimoto's.

    ncbi.nlm.nih.gov/pubmed/245...

    thyroid.about.com/od/public...

    gponline.com/clinical-revie...

  • Thank you!

  • Regarding lab results . I didnt get a copy of my last ones, and its been over 6 months since the previous ones. And the range of tests is not comprehensive. I will however take up the advice of getting private testing done.

  • Hi I am also fairly new but years of deterioration! My Endo is prescribing T3 but I have to pay privately and is 250 a month just for the prescription. You can source cheaper in Euro. I saw some nutrition advice in a thread , read Dr Isabella Wentz book. She too had Carpel Tunnel- for me its my feet and legs can hardly walk. Also Thyroid Patient Advocate has a brilliant newcomers letter and resources outlining the basics and supplements. Stop the Thyroid Madness and Dr Peatfields book also very good. I think then u will understand the basics of the biochemistry happening.

    I went to Dr with similar mix of hyper/hypo symptoms and put on Antenalol which now learn 6 years later interferes with thyroxine absorption hence chronic hypo symptoms.

  • If you PM me I will give u details of my bery good Endo but he is in Lincoln

  • Pity you are not South as there is young lady Endo at Bournemouth Hospital who is delightful. This precribing of T3 is very contentious to say the least. l dont know yet if l may need it but it is very expensive due to greedy Drug Companies- who need curbing. Expect you are aware GPs have a budget each year of how much they can spend on drugs - or similar. Also our way the Southampton Labs will not even carry out a T3 test when its ordered - on grounds of cost (which doesnt affect them) and dont even say they are not doing it. As you will no doubt have heard, people on here buy T3 in France or Greece privately for flumpence. You are fortunate to have such an open GPwho at least admits what she doesnt know. I have had symptoms denied by 6 or 7 GPs for over 40 years, and only getting help now as l had to make a strop! And my 'adrenal' trouble doesnt show up in a normal Thyroid test. Hope you find a good Endo up country

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