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Thyroid UK
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Confused after seeing private endo

So, I have had my private appointment with endo from the list. He was kind and considerate, talked to me as if I was a little child, with patience and slightly condescending... Explained how pituitary produces TSH and how T4 signals back to pituitary... bla bla... He looked at my private thyroid blood test and said it was meaningless... Raised Anti thyroid globulin antibodies ( 545) meant nothing and definitely not an indication of Hashimoto's ( ???). According to him body produces antibodies to all sorts of tissues, which does not mean autoimmunity at all...hmm... My FT4 ( 14.1/ range 12-22)and FT3 (4.3/ range 3.1-6.8) are within normal range and the fact that they are at lower end means nothing. How about the fact that I feel all the symptoms of hypothyroid? Persistent low body temperature- thermometer is inaccurate, low energy levels - you must be stressed and overworked, depressed and unmotivated - what do you do for work?, no sex drive - smirk, when did you have your menopause? ! You can't win! Eventually, rather reluctantly he prescribed thyroxine 25mg. Now I am not sure and confused if I should take it at all? May be I am mad and should just accept I am getting old... Shall I try it for a couple of months? I do not have any experience with this meds and I heard that NDT works better for most people...I would appreciate your opinions and may be some encouragement.

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Dear Windsinger,

It’s too bad that as “kind” as this endo was, he spoke to you in such a condescending manner.

The endo should look at the whole patient - not just test results - people at either end of the hypo/hyper scale often go untreated even though they have bothersome symptoms. If your symptoms are serious enough that they affect your daily life, then your complaints should be taken seriously. We are all getting older - this is not necessarily the reason we feel tired!

I’m concerned that he dismissed the antibody results as well - I would at least want to have the test rerun to compare the results. His explanation seems unclear to me. Why not investigate further?

I don’t know if 25 mg of levothyroxine is enough for you - I know that others on this forum can provide good advice and I’m sure several will respond to your post.

I know how it feels to have your symptoms dismissed. I had that problem before I had back surgery years ago when my GP couldn’t be bothered to refer me to an ortho and gave me an Rx for pain killers. I couldn’t walk 10 ft and got my surgery two months later thanks to a referral to a surgeon from my physiotherapist.

I just had a TT 5 weeks ago - and both my surgeon or endo are helping me get adjusted to my medication and other issues. You deserve the same consideration and treatment from your doctor. Can you bring someone with you for a follow up appointment? When are you seeing the endo again to follow up on he prescription? Older women tend to get better treatment when they go with someone. (I am speaking from experience here).

I wish I had more info for you about your med dosage. But I wish you all the best and hope you feel better soon - and get the help you need. Sending you positive thoughts!

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I’m really sorry your Endocrinologist is treating you this way. It’s definitely not right. Do you have your TSH figures. This is really important. Also you could do with getting your vitamins checked. These are really important to drive your thyroid. B12, D, Folate and Ferritin. Must all be optimal not just creeping in the lower part of the range. Get your bloods done for these please and if they are low get medication to help this may push up your thyroid levels.

My Dr told me 5 times I had depression when I thought I was having thyroid symptoms. I went back 5 times. Eventually he agreed to a blood test and my TSH was 36!

My sister went to see an Endocrinologist he told her the same. She switched hospitals they found a lump. Did a fine needle aspiration and she had thyroid cancer. Within 2 weeks it was removed. So if I was you I’d get your vitamins checked first. Then I’d change Endocrinologist for a second opinion. Also get copies of your blood tests from the GPs receptionist. You are entitled to them. This may take a few months in all. It’ll be worth perusing! If they won’t help you have to push. I’ve lived and learnt all of this. Now I’m not converting T4 to T3 and waiting for T3 medication. I had low B12 and ferritin now being resolved with medication. All this I’ve had to push for. Eventually if you have issues and push you will get somewhere. I had to go private now too for confirmation.

Regarding the 25mcg if he has prescribed it I’d take it. It can only help. But when you get bloods done do not take Levothyroxine for 24hrs beforehand. Levo makes you spike and this will elevate your results. Take it just after they take your blood. This is standard. Make a diary if your symptoms, this could help you put your case across. Turn it into a project for bettering your health.

P.

👍

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You don’t say what your TSH is, but If this was an endo recommended on the Thyroid Uk list, he needs to be removed before anyone else wastes their time and money. It would help if you contacted them to let them know. His condescending attitude is not something I would want to pay for, I can get that for free from my GP! 🤸🏿‍♀️🥛

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My thoughts exactly MissGrace! If he is on our list - he has to be removed ASAP! If I wasn’t depressed before a consultation like that I sure would be now. Grrrrr - total waste of money.

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£170 for consultation and ! £191 for a follow up thyroid blood test! Would not accept online results... :( Who can afford it?

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That is appalling - beyond words - even for me. Did you pay for his blood tests? Even if his labs use different ranges your results will probably be at the same place within the different ranges so interpreting them isn’t rocket science.

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Outrageous not to accept bloodtest results you provide

Full private testing via Medichecks or Blue Horizon is only £99 - often offer at £79

If they won't accept standard private blood tests, they need to be removed from the recommended Thyroid specialist list

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.............especially when they might use the same laboratories and make a tidy little mark up on top :|

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The bottom line for me after reading your experience is that in the end you got nothing you needed to feel better from this man. Only condescension, bad medical advice, and dismissal. Lord deliver us all from kind, ineffective doctors who provide 'pat on the head' advice and do nothing to help us on the path of wellness. Don't waste any more time or money on him. He has destroyed your self-confidence. Take your fate in your own hands as so many others have learned how to do here.

My guess is you will get a lot of good, effective advice here very soon, some of which may include learning how to self-medicate. It's not difficult and the guidance will be correct, detailed, and ongoing.

Some might also say try to find a better caregiver but, imo, you are already feeling bad (with terrible lab values, not to mention a very incomplete workup) so why continue to be untreated, receive incorrect information, and waste more time being sick?

Move on and from this forum learn how to take care of yourself.

He has made you doubt yourself which is wrong, cruel in its own way, and a time waster none of us can afford because he took you in with kindness and condescension. Almost worse than a rude and abrupt caregiver because he offered false trust.. At lease you know where you stand with more direct people.

Make your goal finding effective treatment for yourself instead of searching for the perfect doctor. You may not find him. Your post was only written 7(?) hours ago.

My guess is that before the day is out experienced and knowledgeable posters on this forum will reach out and you will be on your way to developing your own effective care plan.

Unfortunately your experience is all too common.

Fortunately you do not need letters after your name to receive information here to start yourself on the path of feeling well and becoming euthroid thru your own efforts.

Lecture over. You can do this. Sending you wishes this begins to happen soon for you.

Take care. irina🐱

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I heartily agree with this advice.

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thank you for your supportive replies everybody. I woke up this morning thinking I am going to give 25mg of thyroxine a go... Have been looking how to take it. Realised that doctor never advised how to actually take it - with food, in the evening, in the morning...? From what I read I gather the same time in the evening with a big glass of water away from food. Right? Still wondering what raised antithyroid globuline antibodies mean? My TSH is not that high 3.35 ( range 0,27-4.20), but on the higher side and according to Izabella Wentz is above optimal... So, here is a problem, I am not terribly sick, I am just constantly feeling like there is not enough fuel in my tank... Because of this ( and I have been living with this feeling for decades) I have developed a lot of health supporting routines - detoxing, supplementing, avoiding gluten, dairy, soy and fluoride, eating organic etc,,, So my vitamin levels are all good - B12 is too high if anything ( 929, range 145-250), vit D on the higher side ( 96) . Do not know ferritine, but transferrin saturation came out as 50.27% ( normal less then 45%) which means high iron as I understand... So, as you can see it is not black and white and endo wanted to start slow, I am glad he agreed to try at least... Although private he said he still has to behave according to NHS guidelines, which means he would not prescribe NDT or T3... He said it was dangerous and not optimal. hmmm... I will write to admin to explain and suggest amendments to recommending him on the list...

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I always think that if your doctor thinks you are a hypochondriac because you never feel well and have weird symptoms then they should check out your thyroid.

There was I being told I ‘needed a holiday’ after doctor had listened to my symptoms while looking at me like I was some sort of specimen - three months later after I had a near miss in my car I was diagnosed with Graves’ disease - clearly the holiday didn’t do me any good - I had got worse.

Hang on in there - you will get loads of good advice on here.

As for no advice on how to maximise the effect of your levo - I have come across so many people who just take it at breakfast and wash it down with a cup of coffee, also come across people who are prescribed it when they have no symptoms and low thyroid was discovered in a routine blood test! Lucky devils when you think what some people on here go through - yourself included.

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You need ferritin tested

High iron can be a problem

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Take your meds on an empty stomach. If you can guarantee an empty stomach after evening dinner then that's fine but the best time for most is first thing in the morning one hour before breakfast. (I take mine when I stagger off to the bathroom about pre-dawn, then I go back to bed) And yes, with about 8oz of water (a regular glass of water). If you feel no difference on this 25 mcg it would not be surprising, that's lower than the usual starter dose of 50 mcg - give the 25 mcg about a couple of weeks then increase it, paying particular attention to how you feel - and your pulse rate. If the latter increases too much drop back to 25 mcg and get another blood test and probable increase by 1/2 a 25 pill.

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great advice. Thank you :) x

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And no tea, coffee or anything with calcium in (milk, cheese, yoghurt... for I think 4 hours

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Where do you get the ‘4hrs’ from 🤷‍♀️ Drs recommend 30mins but I think most underactive people wait an hour.

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See SlowDragon's post below (my emphasis):

"Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away. some like HRT, iron, calcium, vitamin D or magnesium at AT LEAST 4 HOURS AWAY from Levothyroxine"

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Oh I see you were talking about medications not foods/drinks.

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Talking about both really. A lot of foods contain calcium, especially dairy products, and some are fairly high in iron.

you can take vitamin C with thyroxine, in fact it's a good idea as it helps it to be absorbed, so maybe fruit juice would be OK, but that's all

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Ok, i May getting a bit confused with your answer😬 easily done on this forum 😂 But I was only talking about Levothyroxine and only needing to wait an hour to have a brew or eat. I only take Vit D atm at that’s a spray so that’s different again 😀

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Sorry if I wasn't clear enough. I was talking about Levothyroxine too. Anything with calcium etc in, and also I think tea or coffee needs a wait of about 4 hours.

I hate not being able to have a cuppa or cereal with milk for breakfast (Milk contains calcium of course) so usually take mine in the night, when I wake up for the Loo.

Just to make sure... Is that correct SlowDragon?

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I never heard of 4hrs. I think that’s extreme 😱

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Yes

Paula6

any calcium rich foods is supposed to be four hours away from Levothyroxine

So yoghurt, kefir, milk etc best avoided ....which rules out most common things for breakfast

Probably tea, coffee are OK as it's only small amount of milk

See point 9

Any foods to avoid

nhs.uk/medicines/levothyrox...

Calcium-rich foods, such as milk, cheese, yoghurt and broccoli, can reduce the amount of levothyroxine your body takes in. Leave at least 4 hours between taking levothyroxine and eating calcium-rich foods.

Personally I think that may be why taking Levothyroxine at night can work better

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Oh no I’m fine then *phew* I have mine with half a pint of water, then about an hour later I have a decafe tea with a drop of milk, although I’ve started cutting out milk now too. Not really for health reasons I’ve just gone off the taste of it. And I don’t usually eat till 2/3pm so all good on the Levo front for me 🙌

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hi

sorry you had to go through this, there's a lot of pratts out there... However, you should take it, you are at the lower end. I don't personally think you need ndt as you seem to be converting to t3 OK. Change your consultant (remember, you can go anywhere in the country and see anyone you choose) and get re-checked.

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thank you, that is encouraging... I will take this 25mg of thyroxine for 6 weeks and see... Just worried, as many report side effects. Do not want to make it worse... Can you please tell me how to take it best? When in the day etc? Endo did not say anything about it and apparently it is important...

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hi, I was told to take it in the morning 1/2 hour before breakfast with a full glass of water. However, t4 works by building up in your system and so it isn't really a problem when you take it (although you should avoid food for 1/2 hour). You probably won't feel the difference in your health for up to 2 months, so give yourself that long. See if you feel better and if you feel great then continue on that. If not see someone else. All the best, cx

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Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away. some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Standard starter dose is 50mcgs Levothyroxine, but if over 50years old, recommended to start at 25mcg dose

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Bloods should be retested 6-8 weeks after each dose increase

Would recommend including vitamin D, folate, b12 and ferritin too, or doing full iron panel to check ferritin and iron levels. In case of iron overload (hemochromatosis)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). 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

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

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

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What a patronising self-serving condescending old fashioned old fart!

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haha! You are right :)

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Try the levothyroxine he prescribes, self-manage, see how you feel, get your own blood tests etc. Desiccated was good for me until I needed more t4 than it could supply without also giving too much t3...... did you say what your tsh was when you had the t3/t4 results?

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My TSH was 3.35... When you say ' self manage', what do you mean by that? How do I self manage? I cant get it without prescription, and to get aa prescription I need to see this doctor and pay £191 for the blood test? What is the other way? Sorry I am a bit naive... Would love to self manage though...

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this endo said it will give me heart attack if I take T3...

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Well, if He has good clinical reasons for saying that it’s advice probably best not ignored! Having said that I am aware there is quite a lot of controversy over risks and benefits in that regard for correcting hyperthyroidism.

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I definitely felt the effects on my heart from too much desiccated thyroid and if you have risk factors for cardiology then it is probably best avoided.

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True. But there can be a long road between too much and the correct and therapeutic amount. 😊

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I self managed by using whatever nhs prescription they gave in combination with privately funded desiccated thyroid (from international online pharmacy in the US) and taking private blood tests from medichecks.com whenever I felt unwell or changed thyroid medication and by reading enough to know more than the GP and the endocrinologist! It’s challenging but the alternative is being hostage to whatever the attitude of the NHS clinician you get in that lottery....... your tsh isn’t above the nhs paradigm threshold for treatment but that does not mean you are not subclinically hypothyroid, or even clinically hypothyroid given that your normal TSH, when you were in a healthy state, was more likely to have been between one and 1.5 if you look at the range of results for unequivocally healthy thyroid individuals in population studies. On that basis your TSH is two times over what your normal TSH would’ve been and possibly indicative of something out of whack! The endocrinologist could be right in that your results could be normal for you and there could be other causes for your symptoms but there is an increasing probability you have hypothyroidism when your TSH is over three and your free hormone levels are on the low side, there may also be other causes of free hormone levels being okay and yet TSH slightly or moderately raised, these would need investigating by an endocrinologist who was open to it and you could afford!

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You are right. My TSH a few years ago was around 1... Slightly over. do not remember exactly. And now it is suddenly 3.3... OH, and my total cholesterol is over 12! Doctor suggested statins, but never mentioned possible thyroid link...Thank you for your suggestions... That's what I was thinking... But even getting 25mg of Levo cost me about £400 ( blood test plus consultation)... Can I get Levo without prescription?

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Considering your TSH history and that a private endocrinologist prescribed levothyroxine I would go back to a GP and insist on levothyroxine on the NHS. Stress that your TSH has roughly tripled and you are having symptoms of hypothyroidism. Levothyroxine is widely known to be cheap safe and effective in many situations and the GP should cooperate in at least a trial prescription, if this resolves your symptoms then that is in itself evidence of hyperthyroidism.

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good plan! Thank you! That's what I will do, before giving up and going self hacking... :)

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HYPO not hyper thyroidism! The worst kind of typo;)

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Done it myself. I have a gold medal: world's worst typist!! irina

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High cholesterol is linked to being hypothyroid

Statins are not recommended for anyone who is hypothyroid - see info in this NHS link

nhs.uk/conditions/statins/c...

Median TSH graph, shows TSH of 3.3 is not common

healthunlocked.com/thyroidu...

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Is say there definitely is a cholesterol / thyroid link. When I had Graves and my tsh was off the scale low my cholesterol was really low - now my tsh has risen my cholesterol has increased to way over what the doctor likes. To me the easy way to sort it would be to sort out my thyroid and get me back to a tsh of just below or around 1 which I bet would bring my cholesterol down but nope! Even though my GP acknowledged or seemed to acknowledge there was a link I’d say that is very unlikely to happen. ☹️😠🤔

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As a private practitioner he most certainly does not have to comply with NHS rules or guidelines; but in any case, as a licensed Dr he may prescribe you any treatment he wants to, if he feels it is necessary and will be beneficial, even if it is off-label or unlicensed. You haven't mentioned whether or not he is included on ThyroidUK's list, but in any case, as he has demonstrated on so many fronts, that he is either uneducated and/or a liar, I certainly would not be going back to him - and for that reason alone, would not take the 25 mcg Levo, because you don't know if you'll have the prescription repeated never mind increased, should you see him again, as his thinking seems highly suspect and illogical. Starting and remaining on too low a dose can actually have a negative effect - if your thyroid is producing thyroxine less efficiently than it should, you might reasonably expect a tablet containing 25 mcg to add to the total hormone in your blood, so you'd have more than if you didn't take the tablet. Unfortunately, due to the negative feedback mechanisms in play, the extra exogenous 25 mcg can have the effect of reducing the output of endogenous hormone, and hence people can feel worse on too low a dose until it is increased. If it were me, I'd hold off starting it unless I knew for sure that he would be increasing as required (and that doesn't seem guaranteed given some of the nonsense he said to you); or I'd be writing him off and either seeing someone else based on personal recommendation, or self-medicating & self-testing.

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I feel bad now... He was from the list and he was not that bad... He obviously believed in what he was saying and also he said, that although the clinic is private, it is run by NHS and he had to sign something when enrolling to work there, that he would approach patients the same way as NHS does... So I guess any doctor who works for NHS privately would be bound to this vow... Wow, good to know about possible side effects of loo low doe of Thyroxine... so i need to think twice... :(

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Yes, he was that bad, Windsinger. I'm sure he will fight you tooth and nail because he truly does not understand the thyroid. T4 or thyroxine is very cheap to make. T3 is also cheap. NDT is not expensive except that some drug companies are manipulating prices because they can. I've been here for several years and your story is told a thousand times over and has not changed.

I would run not walk away from this man. It is also possible to acquire thyroid hormone from various places without a prescription. I know it's a fearful thing for someone as new to this as you are to self treat and there is a lot to learn. For one, if you have an idea of what is triggering this autoimmune attack, and it may be gluten or dairy, you may even improve. We've learned that if our organs are not functioning as they should there is always a good reason behind it. This man explains why.

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Thank you, Heloise. Would you please PM me where can I buy T4, T3 OR NDT without script. I have been off gluten and dairy for 15 years, I eat organic etc ect... Done food intolerance blood test, nothing showed up... That's why I was hoping doctor would make more sense... obviously not...

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I wonder why you had no replies from the administration team??????

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Hi Windsinger, I am so sorry to hear your tale, it is very similar to mine. I saw an NHS endo who was like your private endo, then I paid to see a private endo who told my local GP to run TSH and T4 bloods and luckily I 'scored' a high TSH by getting the bloods done on an empty stomach as early in the morning as possible (when the surgery opened) and the GP agreed that I could try starting levo at 25mcg and testing after 6-8 weeks. So, my point here is that if you have managed to get 25mcg prescribed, then you might be able to persuade your local GP to increase the dose whilst tracking your bloods and symptoms. Good luck

x

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Good to hear... Fingers cross :)

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And how did you feel on 25mg of Levo? Curious as what to expect ...

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Since I've worked up from 25 to 50, then 75 and now 100 with only slight improvement in bloods and reduction in symptoms. My vitamins and diet are similar to yours in that I am gf, df, soya free and supplement selenium, magnesium etc etc and track them. I also take LDN (low dose naltrexone). I suspect that I will have to take a tiny amount of T3 as I have the DI02 gene mutation which affects conversion of T4 to T3. My main remaining symptoms are cold body, brain fog, memory, low mood and tired on waking even after 8+ hours sleep. I am also considering red light therapy to improve T4 to T3 conversion. If you haven't already, set up a spreadsheet or some other way of tracking how you feel now, your blood results etc so you can objectively track how you feel. As someone mentioned, it is possible that you may feel worse when you start taking 25mcg as this is a change to your hormonal balance. That said, it's still probably worth taking and see how you go.

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I would be disputing the invoice, he dismissed thyroid problem but gave you prescription for thyroid medication, offered no real diagnosis. Blood test requirement should have been made clear beforehand and arranged with your gp if private not accepted. Write a calm factual letter stating dissatisfaction with the appointment and dispute the invoice, write clearly what you expected from appt. Did he go thro your clinical history? family clinical history? doesnt sound like you got value for money, just some dr waffling and loving the sound of his own voice!

I saw a private endo and i put in writing exactly what i expected and that he wasnt to waste my time or money. It cost £175.00 for an hour to cover everything, we discussed my previous 2 years blood tests, mine & family medical history, he did usual checks like joint reflex, BP, HR, tremors, checked my bone density results, heart & ecg tests as I was self sourcing T3, he put me straight on his NHS list and I get my t3 on the nhs. I went prepared, I always take my husband on my appts who is good at cutting thro any BS and waffle. I cant afford to waste £100's or £1000's and not feel better. Paying privately does not = better quality care. Dispute the invoice or chalk it up to an expensive mistake <3

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Ah, thank you... I need energy to battle it, and that is exactly what I do not have.... You are right, he did not ask any questions at all! He spent all 45 min telling me why private blood tests are pointless and how public is being mislead and abused by this private blood testing, how internet is dangerous source of information and that nothing is wrong with me, as the results are within norm, how his duty of care and Hippocratic Oath call him to not give me any extra medication...The fact that I have a 20 year history of fatigue means that I have a CFS which has nothing to do with thyroid and has an unknown source and could not be helped! I just went very small and silent... :( Then in the last 5 min he said that we were running out of time and gave me a prescription of 25mg of thyroxine, without explaining how to take it or anything... Just to get rid of me I guess... I really cant fight... I will self medicate I think... Can I borrow your husband next time :) I will start a new thread and ask where people get their medications...

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Sounds like sour grapes that patients are arriving at appointments have sourced private blood tests at under half the cost of his private blood tests

If possible, always take a supportive friend or family member along to a consultation.

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I was exactly where you are 4 years ago, i was told it was all in my head, menopause, fat (yes dr said i was fat and losing my looks!) depressed, i was given every pill except the one i needed. I was on so much pain medication, 2 pills for IBS, antidepressants, statins, amyltriptilene, diazepan for anxiety, it got so bad i couldnt stay awake more than an hour. Turned out i was slipping in and out of coma state and my tsh never went over 6. What none of the 3 drs or 2 endos had done was look at my medical notes, that clearly state my thyroid had been removed in 2009.

Researching & reading was exhausting. I joined support groups and started getting myself well. I saw my dr 2 months after starting ndt and he nearly didnt recognise me and said 'dont tell me it really was your thyroid' I had repeatedly told him i hadnt been well since the operation.

I think we instinctively know when something is just not right, at 3.3 your tsh is already creeping up so your thyroid is struggling. It took me getting myself well for the NHS to take any notice. xx sending you love and strength x

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Inspiring story! Thank you. So after removing your thyroid you were not given any thyroid meds? Is it possible? Glad you are feeling better now... I wonder if I should go straight for ndt

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Only you can make the decision to self medicate, it is a leap of faith. For me i couldnt have got any worse, so i had nothing to lose. You have to weigh up quality of life, i had none, i was permanently exhausted and in pain. I have my life back now, i crash several times a year and i am convinced that the years with no meds damaged my body, my adrenal glands are exhausted, my cortisol is very low and never recovered. If your vitamins & minerals are at good levels, you eat healthily and still feel rubbish then you need to take stock. Carry on as you are until your results are so bad and you are so ill they finally do something or reclaim your life back. You may only need a small amount to feel well but only you can make the decision. xxx

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Exactly this! I do not want to wait to be completely destroyed before getting help! I showed this endo my cortisol saliva profile, which looks like a pancake, flat, no rie in the morning, as it should be in normal person , he was not interested, said it was invalid test... Grr... Got my levothyroxin prescription today, going to start tomorrow. See how it goes. Thank you again for advice and encouragement... :)

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lol my endo wouldnt accept my saliva test, so he did blood cortisol test which was very low 95 (150-550) at 8am, he gave me 2 months of hydra cortisone tablets which helped but he will not continue prescription. He is good with thyroid and happy with my high dose of t3 but im on my own ref cortisol. Its rather counter productive as low cortisol hampers t3 uptake, I dont want to be on steroids for life so i do what i can with diet, natural progesterone cream and supplements. None of this stuff is easy and we have to be self reliant x

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I have been considering pregnenolone to support my low adrenal function. Do you have any thoughts on this one?

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I was tempted but a lot of what i read put me off. It is still a pre steroid and can cause estrogen dominance, which i already have and competes for thyroid receptors, I am thyroid resistant on 75-100mcg daily t3. So natural progesterone was the least drastic choice. Its a bloody minefield, i want maximum benefit with minimum interference, its such a balancing act xx I would be interested if you do try it, to hear how you get on x

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Uh, I did not know all that. All I read was that is is the safest form for adrenal supplementation... Special context here I see... I wish doctors were putting their heads to it all... Its like getting another degree! I will let you know if I got to try it :)

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Hello Windsinger. So sorry to hear of your experience with that particular endo. Sadly it can be a familiar "song" for many. It's not clear to me why you saw an endo privately. Have you had no support from your GP?

When age is a factor a starting dose of 25 mg thyroxine is the norm. 6 weeks later, after follow-up blood tests, this is reviewed and if necessary, increased to 50 mg, 6 weeks later the same process, until the right dose is reached for you.

£400 seems excessive to repeat that experience with the same endo.

My GP finally gave me a trial dose of 25 mg Levothyroxine. I was lucky, in that it immediately made me feel better than I had done for years. It's not a usual response to a low dose, but my body was desperate for help! Gradually, my dose has been increased since then, and I now take 125 mg.

Can you go to your GP and discuss the prescription? hopefully your GP will help you, and £400 can be saved, as well as getting you on the road to feeling better :-).

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Thank you for this advice. And good to hear that there is a chance of 25mg working. I have changed my gp after he was just plain rude to me, pointing out that there are people out there much worse then myself. I guess I am not bad enough to spend time and money on me. I actually look OK, can move, speak and appear normal... Fair enough I thought I will pay not to feel guilty by taking someone else's space who needs it more then me... But there is a limit to what I can afford. Have not been to see a new GP yet. Just dreading going through the same humiliation... But I will. Not prepared to pay that kind of money for basic help...

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Try it but consider first if you are a bit stressed and low on adrenal reserves. Uptake of the synthetic T4 can be upset if the adrenal glands are out of whack. If you are not sleeping too or feeling emotionally drained, try cutting down on extra commitments and learn to say No more and do not volunteer your strained resources. Menopause is stressful. Have you thought of transdermal progesterone? Could help

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Thank you, Blot. I was on transdermal progesterone from the age of 39, when I had symptoms of early menopause, till the age of 52, when I had a real menopause. I am 55 now and not using progesterone, as it stopped working for me, made me very sleepy. I guess balance shifted and i did not need it any more... My menopause was quite easy and not very stressful thanks to progest I think... As for my adrenals, I think they are wacked... Cortisol saliva test showed one flat line throughout the day with no rise in the morning and a deep drop in the afternoon :( So yes, I am low on adrenal reserves... What can I do about it? Despite life being pretty quiet and work not very demanding, kids grown up and gone, not much pressure, adrenals are not pumping...

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Yeah, I was told the exact same thing by two thyroid surgeons - thyroglobulin antibodies without peroxidase mean nothing, and then they cut mine out (cancer) and the lab said I had Hashimotos! Well even the surgeon said it was very inflamed straight after the surgery.

That said, a saw a couple of endos pre surgery and they confirmed Hashis based on ultrasound and antibodies. Could you have an ultrasound? I have no idea if you can for no palpable growths on NHS. Maybe no point with your blood test?

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No, he said ultrasound or any other screening with TB antibodies is not necessary, as they mean nothing at all!... These antibodies are doing something in my body, I am sure... No swelling on my neck though... Hope you are feeling better now, Janey.

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Well he’s not right about the ultrasound, as it would show if you thyroid was inflamed, that’s how I found out about mine. But if you’ve had a blood test that proves it anyway. I’d ask to see an endocrinologist. One told me that she would have put me on Levo to reduce my TSH and put my thyroid to sleep. Bit weird, not sure if that works or any other endos do that!? But gluten free and some selenium apparently works. Mind, I do wonder if gluten free only works on peroxidase antibodies. I’d been gluten free for two years when I was tested snd throglobulin antibodies were very high. Other people on here know far more about getting antibodies down. I’m waiting for my 6week post op blood test and really interested to see if the antibodies are going down.

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Ha ha, he was an endocrinologist ... Thank you for your reply. I would think it is obvious to check, but no... I am not paying another £170 to be told my results do not matter... And I have been gluten free for 15 years now... :( May I ask what operation have you undergone? Was it thyroid? Hope you are feeling ok. :)

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Hi, I feel I should sent your endo my pre op blood test results (euthyroid, thyroglobulin antibodies only) together with the photo of my thyroid the anaesthetist kindly took, and lab histology report (this said even at a glance quite clearly Hashis) Then let him say thyroglobulin antibodies are meaningless!! I really wanted the photo to see for myself. Mine was very enlarged. I didn’t realise I had any thyroid issues, until I felt a golf ball on my neck at the end of last year. First ENT I saw said it was a cyst!!!! Anyway, turned out to be Thy 5 papillary thyroid cancer. This is rare but my gut is that there is a link to autoimmune inflammation. Science hasn’t made a connection yet. I’ve got a few post surgery complications. Now have a voice surgeon!

It’s very interesting about the thyroglobulin antibodies. I recall someone once saying only the peroxidase antibodies respond to a gluten free diet. Another lady also had the same bloods as us. I think you should do a post asking if gluten free does reduce thyroglobulin antibodies and any tips for reducing those. It seems to be a fairly recent think one endo I saw said having only thyroglobulin ones. But we are both gluten free, so ,when we got rid of the others.

I agree re paying for the endo. If you did want to see another, my only thought would be to do a post with the region you live in, get a suggestion for one and do an NHS choose and book. Your T4is on the low side. Do you know what it was like years ago? I don’t know a lot about this, all so new to me, but a private endo did give me Levo pre op as he said my T4 whilst in range was lowish. A nurse took my bloods a few weeks ago and has hashis, she refused the Levo and now eats no grains and only wild fish and grass fed meat and only sheep and goat organic cheese, with lots of organic veggies, nuts seeds. Excludes things in these areas she’s sensitive to. Apparently she sees a naturopath that specialises in autoimmune that recommended all of this. She raved about it, but does live an extreme no alcohol life and diet. You could try something like that. She needs no Levo now. My view on this is costs versus benefits. Only worth going extreme if you feel awful.

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This is such a sad story, Janey... Being mistreated and overlooked... I hope you find your way to recovery... Thank you for your advice and sharing. I will try and see if I can get scan privately somehow...

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Yeah, but I am actually thinking whether a scan would a waste of money for you, as probs only tell you what you already know.

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Noooo scan please see my posts x

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Where is your post, Tami?

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Hi sorry all posts on profile x

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Your bloods are within range so it would be very worthwhile to try and get things back to optimal range by changing your diet. Anti metabolic/thyroid ingredients like PUFAs are rife in most consumer products. Also 'anti sugar' and 'low carb' madness will down regulate thyroid. Sorts these factors out and you can make a dramatic turnaround, which is far preferential to being on horomone replacements.

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Really? I stopped sugar about 20 years ago and felt so much better for that! I got some energy back and every time I ate something sweet I was transported back into fatigue, brain fog etc... I do not think it is just a fad... Low carb... May be... Although it was only low carb which helped me to lose some weight... I agree, eliminating toxins is a very good idea indeed! Thank you for your comment anyway. It is good to hear different opinions and be challenged :)

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Absolutely, adding sugar into my diet has transformed my well being, contra to what we all hear. This only worked once I cut out anti thyroid foods though. Look at body temp as a guide, hotter the better for hands and feet.

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Wow! I would love to tuck into chocolate and sweets again :) So what are the anti thyroid foods you have eliminated from your diet? My body temp is about 35.2-35.5... I am a frog, need some chocolate to turn into princess :)

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eliminating PUFAs (vegetable oils, nuts seeds, fish), most vegetables, 'wholegrain' carbs, Increase carbs from rice, fruit, juice, sugar, only fats are saturated.

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Also target temp 98 - 99F, plus no high stress exercise or calorie deficit

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that sounds revolutionary. Where did you get this ideas? What is your justifications? Which vegetables are you not eating? And how is your weight doing? And also your thyroid? Are you taking any medication and which one? I am intrigued. :)

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UK medics still refuse to acknowledge just high TG antibodies as indicative of Hashimoto's.

Many people on here with only high TG antibodies struggle to get diagnosed

healthline.com/health/antit...

"If you have high levels of antithyroglobulin antibodies in your blood, it may be a sign of serious autoimmune disorder, such as Graves’ disease or Hashimoto thyroiditis."

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