At my wits end now: Looking for advice. I have a... - Thyroid UK

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At my wits end now

Lynne1980 profile image
76 Replies

Looking for advice. I have a thyroid peroxidise test result of 190 but my thyroid levels came back normal at 1.5 one of the results was 12 which they say is normal(range is 12-22) have symptoms of feeling tired, weight gain, severe constipation, dry hair and feeling cold. Dr wrote to endocrinology and they won't trial me on medication as my results are normal. Help. Hate feeling so rubbish all the time.

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Lynne1980 profile image
Lynne1980
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76 Replies
SeasideSusie profile image
SeasideSusieRemembering

Well, your thyroid test results are 'normal' in the doctor's eyes, they only have to be in range, no notice is taken of where they lie within that range, nor of symptoms.

Your FT4 (it would seem that is what it is) is 12 in a range of 12-22. So at the very bottom which is not the best place to be. Most people feel best when their FT4 is in the upper end of the range (upper third/upper quarter). However your TSH (I assume) is 1.5 so that wouldn't ring any alarm bells with the doctor.

With TPO antibodies at 190 you have autoimmune thyroid disease, aka Hashimoto's, which will bring about swings in symptoms and results as and when antibodies attack. To reduce these antibody attacks you would need to be scrupulously gluten free, some people also need to be dairy free.

Lynne1980 profile image
Lynne1980 in reply to SeasideSusie

Thank you for your reply. The hospital told me 2 years ago that I would at some point in my life get thyroid disease as my levels were high. At this point I was fighting Chronic urticaria which was an auto immune disorder. They suppressed my immune system and this got rid of the urticaria. At this time I felt OK just been last 6-8 months I'm struggling. I keep getting benign positional vertigo which I've looked at in great detail and can be linked to thyroid problems. I told my dr I thought I had Hashimoto disease. Dr said I was ticking all the boxes but wanted advice from endocrinologist who said my levels are normal and wouldn't support trying medication.

SeasideSusie profile image
SeasideSusieRemembering in reply to Lynne1980

Oh dear, doctors and their ranges and their 'normal'. I wonder how they sleep at night knowing that they are ignoring people's symptoms and denying the obvious help they need.

Would your GP be willing to give you a trial of thyroxine, especially considering he has admitted you are ticking all the boxes? Maybe ask him if you could have a trial for, say, three or four months, assuring him that if you don't feel right you will go back and discuss things with him.

Lynne1980 profile image
Lynne1980 in reply to SeasideSusie

When I asked dr for trial he said he would seek advice first from endocrinology as his hands were tied. Now he has offered to refer me to general dr at hospital that doesn't specialise in anything so don't see the point.

SeasideSusie profile image
SeasideSusieRemembering in reply to Lynne1980

To be honest, I don't see the point in a general doctor at the hospital either. But it might be an idea to accept the appointment, you never know! At least you can then say "Doctor, I have done everything you have asked of me and I still feel like s*** (or words to that effect!), can you please let me have a trial of thyroxine. If not then I feel that the only course of action left to me is to look into self treatment."

The more I read, the more I get worked up about these doctors who really don't give a toss about how their patients feel.

My GP wants to reduce my levo because I have a suppressed TSH. She was going by tests that were over 15 months old, she never even suggested re-testing. She also mentioned sending me to an endo - did that years ago, got treated like a two year old by an absolute pig of a bloke, I wont repeat the experience because I have better things to do with my time and my life. I have now taken things into my own hands. I am dodging suggestions for repeat tests, l am continuing collecting my prescriptions for levo, I have done lots of private tests to find out where my problem lies and I am supplementing where necessary, and I'm tweaking my meds with the addition of a little T3 I sourced myself. My GP doesn't know this and I have no intention of discussing it with her at the moment. I actually feel better than I did six months ago, no thanks to her.

Sometimes we have to help ourselves because the doctors wont.

Hoxo profile image
Hoxo in reply to SeasideSusie

Sounds similar to my story. Supressed TSH for years. Battles with GP n Endos. Now self treat. Paper by Midgely et al talks about suppressed TSH. Graph shows some patients have suppressed whatever theory t4 is. Will find link.

Veggiequeen profile image
Veggiequeen in reply to Hoxo

I feel better with a supressed tsh but doctor is horrified by it. Do you have a link to the paper by Midgely. I would be interested in looking at it.

Hoxo profile image
Hoxo in reply to Veggiequeen

For some reason it won't let me paste link to the paper. Search John Midgeley and TSH measurement and implications for personalised clinical decision making. I like figure 3. There's a line of suppressed tsh results along the bottom of the graph that correspond with a whole range of free T4 results. ie suppressed TSH NOT correlating to high FT4 in a subset of patients. If this is the case then how can they ever say with 100% certainty that suppressed TSH = over treatment. They can't. In some people suppressed or low TSH does not mean over treatment and in fact the data shows some are under treated. I showed this to my GP :-)

sweetsusie profile image
sweetsusie in reply to SeasideSusie

My doctor did the same thing to me..no support..no nothing. Finally, my TSH level was high enough that she gave me the levo. I've changed to a male doctor for this year to see if he'll be a little more openminded.

Lynne1980 profile image
Lynne1980 in reply to sweetsusie

I go to the same male dr as he was amazing with my chronic urticaria and got me to the correct specialist. Beginning to now think I need to be changing though as I have no faith in him anymore. Treat the patient not the blood results doesn't seem to work with him.

humanbean profile image
humanbean

Can you remember what time of day you had the blood taken for this test?

For future reference you must have blood taken as early as possible in the day, preferably before 9am. TSH varies throughout the day and to get the highest result you need to have it tested early.

It is also a good plan to always have the test before you eat breakfast. Save breakfast and coffee/tea until after the blood is taken. (You can drink water.)

If you ever start medicating with thyroid hormones the test should be done having not taken any thyroid meds for 24 hours.

With a Free T4 of 12 in a range of 12 - 22, the chances are that your Free T3 is not good either. You need good levels of T4 to have enough to convert into T3.

There is a possibility that your doctors obviously haven't considered. With a bottom of the range Free T4 and a normal TSH you might have secondary or tertiary hypothyroidism (collectively known as central hypothyroidism. It's complicated). Doctors consider it to be rare so don't often think about it and don't test for it. Hence it becomes rarer still. *Rolls eyes*

But the most likely cause of your problems is Hashimoto's aka autoimmune hypothyroidism. Depending on how active your antibodies are in attacking your thyroid you could come up with all sorts of results. Repeat the test a week later and the results might be different again.

In order to feel well, one of the things you need to do is get the antibody levels under control.

Have a look at these links. The author is a Hashi's sufferer herself :

thyroidpharmacist.com/

facebook.com/ThyroidLifestyle/

The author's book can be bought from Amazon and you should read the reviews :

amazon.co.uk/Hashimotos-Thy...

I have to admit I've never read it... I don't have Hashi's as far as I know, and it's an expensive book. I wish there was a cheaper kindle version. :(

Lynne1980 profile image
Lynne1980 in reply to humanbean

Thank you for your reply my bloods were taken at 12 midday. I'm getting so frustrated now as they are being told I'm high risk for auto immune disease and they aren't listening even though I have symptoms. I'm actually sending myself round the bend.

SeasideSusie profile image
SeasideSusieRemembering in reply to Lynne1980

You're not high risk for autoimmune disease, with TPO antibodies at 190 you do have Hashimoto's, no doubt about it. I sometimes wonder whether these doctors know their a*** from their elbow!

The best thing you can do is educate yourself about Hashi's, Humanbean has given you some links so that is a start.

Lynne1980 profile image
Lynne1980 in reply to SeasideSusie

Do you know how they go about treating it. Or is there no treatment. Thanks for all your advice. I really appreciate it. Are you medically trained or are you like me and self training.

SeasideSusie profile image
SeasideSusieRemembering in reply to Lynne1980

The treatment for Hashi's is no different from the treatment for hypothyroidism. They don't actually treat the Hashi's, this is where going gluten free (no cheating, absolutely scrupulously gluten free) helps to dampen down the antibody attacks.

I'm not medically trained at all, just got 40+ years experience of hypothyroidism and increasingly stupid doctors.

(I think I must have my ranty head on today, oh dear!)

I don't have Hashi's, just repeating advice I've seen given time and again to people who do have it. Many people have helped themselves enormously by going gluten free, sometimes dairy free is needed too.

in reply to SeasideSusie

But going gluten free is not a cure. I went totally g free years before I knew I had antibodies and I still had a multitude of symptoms and needed treatment.

SeasideSusie profile image
SeasideSusieRemembering in reply to

No it isn't a cure (I don't think I said it is) but many people find that going gluten free can help reduce the antibody attacks. Some people also need to be dairy free.

in reply to SeasideSusie

Sorry SSusie, I didn't mean to look as tho I was dissing you, just in case the poster

in reply to

Just in case the poster got the wrong idea... it is an interesting area, I think there are a couple of research studies finding the antibody count goes down in celiac once gluten is cut out, Of course it will be many years before there are studies for gluten sensitivity, which isn't even firmly established as a condition yet, though it is clear to many that it does exist.

Many say anecdotally their thyroid antibodies reduced off gluten, but personally I think it is unlikely that everyone with Hashis needs to go gluten free, even though I am. I do think everyone would be wise to trial it though, an absolute exclusion diet for a while to see if there is a reaction on returning to gluten. It may well be most

helpful for those with gutbsymptoms like bloating.

GJM1 profile image
GJM1 in reply to Lynne1980

Like SeasideSusie, I have 40+ years experience of hypothyroidism (following surgery) and uninformed doctors keeping me ill. You are clearly hypothyroid. Most people need to be at the top of the T4 range to feel well. You can help yourself through dietary changes but may also need medication. Most importantly look for a doctor, preferably an endo who is better informed.

Research goitrogenic foods - to be avoided, however I do eat broccoli occasionally well cooked. Research foods that help with hypothyroidism. As SS says, go gluten free, avoid fluoridated water, I take selenium, b complex, probiotics and fish oil (mostly for my arthritis).

I also developed fibromyalgia (caused by thyroid dysfunction) and after a couple of decades of the debilitating symptoms and reaching rock bottom with no quality of life - I took matters into my own hands and researched. I made changes (including those above) and am a different person.

My doctor referred me to an endo...by the time I got an appointment, I'd sorted things out myself through research. Endo said I am doing exactly what I should be but my uninformed GP who sticks to outdated medical protocols was not happy - so I am not going back.

When I lived in the UK, I had an excellent naturopath/osteopath who had written a book on hypothryoidism - that might be another avenue to explore.

Good luck.

Lynne1980 profile image
Lynne1980 in reply to GJM1

Thank you for your reply. I'm hoping now I've booked to see dr toft I might get better help. It's so frustrating how they don't listen to how your actually feeling just what the tests say are normal. I have ordered dr tofts book to read before hand to see what his thoughts are. Ridiculous that I'm having to pay private costs because gp's aren't listening.

GJM1 profile image
GJM1 in reply to Lynne1980

GPs not listening is an international problem sadly. Maybe it is just easier for them to stick with what they (think) they know rather than bring themselves up to date. It is not good enough...they are keeping people ill.

Unfortunately it usually does cost a lot to see the best doctors but hopefully he will sort things out for you quickly. Even if he puts you on medication it is well worth focusing on diet as well to improve thyroid function.

I hope everything goes really well for you and that you feel much better very soon. :)

sweetsusie profile image
sweetsusie in reply to Lynne1980

Sometimes I feel like I sound like Charlie Brown's Mother when she speaks...mmmmmmmmmmmmmmm. This is what the doctors hear...they do not listen to their patients and it drives me crazy!

Susi1691 profile image
Susi1691 in reply to GJM1

Hi, would you mind messaging me the name of the good doctor you had here in UK ?! Thank you

Lynne1980 profile image
Lynne1980 in reply to Susi1691

Hi I have app with Dr Toft at spire Murrayfield in June. Got his details from thyroid uk website.

Susi1691 profile image
Susi1691 in reply to GJM1

Could you tell us the name of your naturopath in UK ?! Thanks

GJM1 profile image
GJM1 in reply to Susi1691

Sure, he is Martin Budd. I was worried he might have retired but I see he has a website: martin-budd.com. He also treated my son who at 4-5 years of age became very unwell...doctors over-prescribed antibiotics making things worse. Martin Budd diagnosed an inefficient immune system and through treatment brought him back to health. He is also an excellent osteopath... diagnosed my son's neck injury that flared up badly when he was around 10 - when doctors couldn't diagnose and wanted to tell me there was nothing wrong. He treated him for that too. My son was also treated by Stuart Korth (leading pediatric osteopath). Martin Budd was better than any doctor I have ever been to and my health has certainly suffered since I haven't been able to be treated by him.

Sara70 profile image
Sara70 in reply to Lynne1980

I hear you hun! 😡

in reply to Lynne1980

Get a private blood test and do it at 7am if poss.

sweetsusie profile image
sweetsusie in reply to humanbean

Best advice I ever got was on this website, regarding having the TSH tested as early in the morning as possible, on an empty stomach!!

Lynne1980 profile image
Lynne1980 in reply to sweetsusie

Don't know if my dr will test again though as he doesn't think there's a problem. Can't believe I'm reading on here that the time you get bloods done is important. I had mine done at midday.

humanbean profile image
humanbean in reply to Lynne1980

Not sure if I've already posted this on this thread. I might be repeating myself :

press.endocrine.org/doi/pdf...

Look at the graphs on page 2 for the circadian rhythm of TSH, and see when the highest and lowest values occur. Bear in mind that blood is taken during working hours and then you can see that the highest result occurs as early in the morning as possible.

SlowDragon profile image
SlowDragonAdministrator

Can you get GP to test your B12, vitamin D, ferratin and folate levels.

If any if these are low (common with Hashimoto's) then you can find it difficult to use the thyroid hormones

Do you suffer from stomach issues (acid reflux, bloating, IBS etc? ) if so going gluten free may well help. Some have found it also significantly lower antibodies slowly over many months, reducing symptoms.

Private testing can be done at home via finger-prick tests (many of us have given up asking GP) eg Blue Horizon home test - thyroid plus eleven

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

Not read the book yet by Isabella Wentz ...but many recommend - see Amazon or

thyroidpharmacist.com

I am just a fellow Hashimoto's patient......still suffering/learning after more than 25 years.

Lynne1980 profile image
Lynne1980 in reply to SlowDragon

Thanks for your reply. The more I read on here the angrier I'm getting. I suffer from ibs but has always been mild constipation and bloating. This has changed in last 6 months and now have to take fibogel and a laxative every night to move my bowels. Was never this bad before. The dr just accepts that's the way it has to be.

SlowDragon profile image
SlowDragonAdministrator in reply to Lynne1980

Magnesium supplement may help with constipation.

Lots of Hashimotos patients seem to suffer low magnesium - as well as many other low vitamins & minerals. Low stomach acid can reduce our ability to absorb nutrients from what we eat.

Also we also often have acid reflux due to LOW stomach acid. Not something I have had much...others say Apple cider vinegar helps. Or if very bad Betaine HCL

GP's often seem to confuse reflux as being due to HIGH stomach acid .....then prescribe PPI's, these lower magnesium further

gov.uk/drug-safety-update/p...

The book The Magnesium Miracle is worth reading, not that it looks at thyroid...just magnesium .....or "google" obviously

It explains why Serum magnesium blood test is not worth doing - if going to test needs to be Whole blood Magnesium RBC test.

Vitamin D

chriskresser.com/the-role-o...

What time you take thyroxine is important, some find taking at bedtime gives better results (myself included), must be 2 hours after eating, and no food or drink other than water for hour after either.

Very important when get thyroid levels tested not to take Levo in the 24hours beforehand (take it straight after test instead) and ideally get test early in morning before/at 9am, don't eat or drink other than water beforehand (this all helps give highest TSH and help stop your GP wanting to reduce the Levo due to "TSH being too low").

Lastly Supplementing Vitamin C (with zinc) may also improve thyroid as well as constipation

If you can keep notes or a file of all your results - helps to see where you are at, what improves you etc. It is a complex puzzle and only you will understand what works for you. We are all different.

You can now access you own GP patient notes on-line, if you are in UK. Need to register first at the surgery. This gives you access to all your blood test results going right back over the years - very useful

Hellsy profile image
Hellsy in reply to Lynne1980

As has already been suggested, you need to go gluten free. The bloating and constipation may disappear once gluten is removed. If not, it's worth trying eliminating one at a time, dairy, soy and eggs. All of these foods can trigger thyroid antibodies to attack the thyroid .

Its highly likely you have leaky gut and that needs healing.

Where do you live? You could ask for a referral to a different Endocrinologist. If that's not possible perhaps ask your GP to speak to the Endo to try and establish your need for evaluation.

So sorry you are suffering like this. We all empathise with you as many of us have been in similar difficulties.

Another, aspect to bear in mind is adrenal function. There is a saliva test to check that.

Are you relying on coffee for energy? Unfortunately, that will be affecting your system too. If you do use coffee, it would be far better to wean off it and maybe just have weakish cups of tea as that's far less stressful for the adrenals.

Oh and before you go gluten free (if you are willing to do that?) I would get a test for coeliac disease as once you're off gluten coeliac disease can't be detected.

Good luck!

Lynne1980 profile image
Lynne1980 in reply to Hellsy

Hi thanks for your reply. I live in Edinburgh. My GP asked endo got advice after I requested a trial of thyroxin and they said they wouldn't support it as my levels are normal. Not interested in seeing me which is why I'm going private. I do rely on coffee to get me through the day but that's only recently as I'm so stressed out now getting nowhere with my Drs. I've been tested for celiac and it came back normal. Although I am now doubting what normal is.

Hellsy profile image
Hellsy in reply to Lynne1980

Not sure if you're willing to go gluten free but it really is essential. I am gluten sensitive not coeliac. Having eliminated it completely from my diet if I have even the tiniest amount I react, bloating constipation, fatigue, itchy rash. The reaction can be stronger for some with an intolerance than coeliac's!

Coffee will make strest worse I'm afraid. Our bodies are incredibly complex and coffee can have negative impacts in various ways.

Annoying I know!!

Lynne1980 profile image
Lynne1980 in reply to Hellsy

What does cutting out gluten entail. Is that bread pasta etc.

Hellsy profile image
Hellsy in reply to Lynne1980

Gluten is in many foods, mainly bread, pasta, pastries and biscuits. The good news is there is massive choice now in the 'free from' Isles of the supermarket. You can get gf bread, pasta etc. At meal times you can have potatoes, rice and many alternative grains like quinoa.

Many with auto immune conditions go on an auto immune paleo style diet. I haven't done that as yet but am feeling very good having eliminated gluten, dairy, soy and eggs. I've been focusing on healing my adrenals right now.and hope that with better energy, as I get back to daily walking and some functional exercises, I'll loose a few more lbs!

in reply to Lynne1980

Cut out all wheat, rye and barley. You have to read every label, watch out for barley malt flavouring.

But I think you need treatment, not just a trial of g free.

in reply to Lynne1980

Many of us rely on coffee to survive .. you can cut it down once you are optimally treated. But if you are drinking unfiltered coffee, filter it. There is some reasonable research linking unfiltered coffee to higher cholesterol, and it tastes the same .. to me.

in reply to Lynne1980

Bet your free T3 is low.

Marz profile image
Marz

I was diagnosed with Hashimotos in 2005 after retiring to Crete - I was 59. Have had a lifetime of illnesses ( click onto name and read Profile :-) )

My TSH - FT4 - FT3 were all in range at the time of diagnosis - which was based on the VERY HIGH anti-bodies. They have only reduced in the last 3 years by going gluten free. My GP at the time started me on T4 as she said my thyroid would need support whilst under attack from anti-bodies. Thank goodness - I guess in the UK I would still be undiagnosed and exahausted. I am now T3 only.

Healing the gut is key in reducing anti-bodies for anything - and inflammation that can flare up in any part of the body.

I am a great believer in having the tests for B12 - Ferritin - Folate - Iron - VitD - as others have mentioned. Having levels that are OPTIMAL can be so helpful on your journey to wellness.

Your FT4 is on the floor so your thyroid is not producing the storage hormone. It's the FT3 result you need to know - as that is the Active hormone needed in every cell of your body. Am convinced it's a way of keeping everyone ill in the UK by saying that only an Endo can test for T3 - so that people are treated for money making pills. T4 is cheap to produce as is T3 here in Greece.

You have lots of good advice - so keep asking questions and understand you are not alone. :-)

Lynne1980 profile image
Lynne1980 in reply to Marz

Thanks for your advice. Tsh is 1, free t4 is 12, t3 is 1.5 Thyroid peroxidise 190. I honestly can't believe that gp isn't willing to do anything. I'm going from being upset to getting angry as so frustrating. I'm with you that they know my thyroid is going to be attacked at some point so why are they not supporting it.

Marz profile image
Marz in reply to Lynne1980

.... possibly down to Guidelines which they - for some reason - think are RULES. Do you have the range for the T3 ? - is it really that LOW ?

thyroiduk.org.uk

The above link takes you to the website of Thyroid UK - so much helpful information to ensure you will know more than your GP.

Lynne1980 profile image
Lynne1980 in reply to Marz

I got the figures from thyroid uk saying normal is between 4-8.3 mine is 1.5 so I'd say that wasn't normal. Just wanted to check on here incase I had that wrong.

Marz profile image
Marz in reply to Lynne1980

It would seem to me that you have a conversion issues going on as well as the LOW T4.

Don't forget to have the Ferritin - Folate - B12 - VitD - Iron tested too - they are all involved in good thyroid metabolism .... They need to be optimal in their ranges and not bumping along the bottom of the range !

Lab ranges vary by the way - which is why people usually ask for them ....

Lynne1980 profile image
Lynne1980 in reply to Marz

My iron levels are fine I'm waiting for vitamin d results to come back. Hopefully dr toft will have a better idea.

Marz profile image
Marz in reply to Lynne1980

B12 needs to be around a 1000 - Ferritin around 80/90 - Folate mid-range. Not sure what fine is for your Iron result - we usually say on this forum that fine/OK/normal is an opinion and not a result :-)

Lynne1980 profile image
Lynne1980 in reply to Marz

Lol yeah I'm beginning to realise that.

diogenes profile image
diogenesRemembering

I've written this many times before in many forums, but I'm repeating it again. When you set "the normal range" you do it statistically. That is you take a group of euthyroid people and devise a range in which (concentrate now) only 95% of people are covered. That is 2.5% are either below or above the range but they are truly euthyroid. This means that the limits of euthyroidism set by the statistics are not written in stone but are (rather than hard goalposts) shadowy probabilities. Taking your limit value of 12, there would be a much greater than 50% chance that you would be deficient thyroid-wise. Sure a very few people, who live well at that limit, would be OK, but the odds for you are very much against. It is this complete misuse of statistics by doctors which they harden up into a firm diagnosis above or below a set figure which fatally compromises it. Your FT4 figure says in capital letters at least "Follow up" and indicates more than this. OK you may be normal, but most likely not. A responsible diagnostician should always have a "grey area" near the lower and upper ends of the range where patients simply are to be specially and carefully observed, and timely treatment taken.

Lynne1980 profile image
Lynne1980 in reply to diogenes

Wow that was hard to take in but makes so much sense. Thank you for your advice. Im hoping the fact I'm now paying to see a specialist they will have a better idea of grey areas etc.

waveylines profile image
waveylines in reply to Lynne1980

Lynne,

Make sure the specialist you are seeing is indeed a specialist in hashi -many aren't but actually specialise in diabetes. Ask Louise Warvil in thyroid uk if you can have a list of sympathetic doctors. Am so sorry but this is a minefield to be honest.

You might also find reading Living with T3 really useful written by a Hashimosis sufferer.

Diogenes is brilliant and has summarise beautifully the consequences if doctors not really understanding statistics and taking things far too literally . An effective doctor will take your signs,, symptoms, blood test results all into account. As sadly you are almost certainly heading down the route of hypothyroidism in the end a wise clinician would start treating once symptoms start kicking in.

Hypothyroidism can play havoc with vitamins and minerals that is why people are suggesting you check particular known ones. Getting these back well into the ranges can help too.

Lynne1980 profile image
Lynne1980 in reply to waveylines

Thank you for your reply. I've has benign positional vertigo for months so waiting for vit d results to come back. I got the specialist details from thyroid uk so I know he does specialise in this. He seems to treat the person not just look at blood results.

Josiesmum profile image
Josiesmum in reply to diogenes

The fact that the NHS/NICE TSH range is so high must surely mean that a significant proportion of the 95% are (undiagnosed) hypothyroid.

Angel_of_the_North profile image
Angel_of_the_North in reply to Josiesmum

Well, since the only way of diagnosing them is the using the range they are contributing to ...

Josiesmum profile image
Josiesmum

Have you tried dietary interventions? Many symptoms can be related to food sensitivities. Testing is not reliable, an elimination diet is the gold standard:

thyroidpharmacist.com/artic...

This is a useful website:

thepaleomom.com/autoimmunit...

Vit C and magnesium are both good for constipation, as are probiotics.

Low FODMAPS can help with bloating:

thepaleomom.com/2012/08/mod...

Lynne1980 profile image
Lynne1980 in reply to Josiesmum

Hi thanks for your reply. I was tested 2 years ago for I think every sensitivity I can think of as I developed chronic urticaria and angiodema. They did the thyroid peroxidise test because of this and I was told my urticaria was an auto immune disorder. They suppressed my immune system and thankfully after 8 months they got it under control. Since then everything has gone wrong and I have never felt better.

in reply to Lynne1980

If you are hypo, and clearly from your symptoms you are, you may well find that treatment clears up the constipation. My friend found the addition of some t3 did it for her. When she stops the t3 it comes back.

So don't be surprised if mag etc don't help. Nothing did for her.

Chippysue profile image
Chippysue

Some people never have s high enough TSH for a diagnosis, I couldn't get out of bed with s free t4 iof 11 or 12 but they go by our tsh.

When you have thyroid antibodies they are there attacking your thyroid, what on earth do your doctors think that they are doing??

At my support group on Saturday a lady joined us who has a tsh over 100 and is no more symptomatic of those with a tsh of say 3. This shows how crap the tsh blood test really is.

We have thousands of people all over the UK who are battling for a diagnosis. It is HARMFUL the longer you leave treatment, everything slows down in your body.

It is a crazy nonesense that doctors are blinkered with the TSH test.

Whereabouts do you live?

The best possible thing that you can do is to gain as much knowledge as possible. Your GP only spent a few hours learning about the thyroid. Knowledge is power. Read the information on the main thyroid uk website to start with.

Wish there was a magic solution but when you realise this is the main reason why there are thyroid groups, forums, books this is the sad fact. Also in America where you are diagnosed if the TSH is above 3, they still have activists like Mary Shomon and Janie from Stop the Thyroid Madness.

Sue

Www.thyroiduk.org

Lynne1980 profile image
Lynne1980 in reply to Chippysue

Thank you for your reply. I've had high thyroid peroxidise for at least 2 years but my immune system at that time was attacking other parts and giving me chronic urticaria. I had no thyroid symptoms till about 6 months ago. I have 3 kids and struggle keeping active during the day. I'm on laxatives every day which dr says is just part of life. I've never had issues with my weight but have put on nearly a stone since February and can't lose it. This in itself is getting me down. I'm in Edinburgh. After researching a lot I told my GP I thought I had hashimotos disease and he wasn't interested. I asked to trial thyroxin and he said he would seek advice from endocrinology. They basically said they wouldn't support is as my results are normal. Feel like I'm going mad.

Chippysue profile image
Chippysue in reply to Lynne1980

Please look in to changing your GP.

I run a support group in Warwickshire and have several members who had no choice but to self medicate.

I remember that feeling well, I really did think that I was going mad, I lost 5 years of my life, which is why I help others.

Are you on Facebook? because you are welcome to join our support group to talk to others as you live too far away to join us?

I can message you the details.

Lynne1980 profile image
Lynne1980 in reply to Chippysue

Hi yes I am on Facebook. Really interested in any help and support I can get at the moment. Thank you.

Marz profile image
Marz in reply to Lynne1980

thyroiduk.org.uk/tuk/diagno...

Lynne -The Thyroid UK website is full of information - hope it helps :-)

Bluemaxx profile image
Bluemaxx

Hi Lynne, I'm fairly new myself to Hashimotos and finding this website a lifesaver. I just have a quick suggestion. Why don't you buy a thermometer and check your temperature every morning upon wakening. I'll bet it's below normal. If you keep a note of the results and take them with you when you next see the Doctor along with a list of your symptoms, it might help you to get proper treatment.

Best of luck.

Lynne1980 profile image
Lynne1980 in reply to Bluemaxx

Thanks for your reply. I have never been told about temperature checking. Is that a symptom if you have a low temperature. That might explain why I'm always cold but rest of my family are roasting.

waveylines profile image
waveylines in reply to Lynne1980

Hey Lynne -te low temperature, slow pulse, blood pressure either going up/down or signs of underactive thyroid. Before blood tests they used to use these alongside symptoms & signs to diagnose & guide treatment. I doubt a GP will listen though as they instructed by NICE to go by the guidelines which explicitly cite high TSH as the key result. High being over 10! Used to be 5!

waveylines profile image
waveylines in reply to waveylines

Apologies for all the errors my iPad keeps taking over! If doing temperature pulse do it as you wake without getting out of bed first thing in the morning

Bluemaxx profile image
Bluemaxx in reply to Lynne1980

Hi Lynne - me too - I'm always cold even in the summer. Yes, as Wavylines says thats how they used to diagnose hypothyroidism. I was diagnosed three months ago after YEARS of feeling tired, constipated, acid reflux, etc. etc. I just wanted to say that at last I am feeling a lot better. You have to slowly work your dose up and make sure, as the members keep saying (but its really true) that your Vitamin D, B12, ferritin & folate levels are optimal (not just in range)! I just started taking the Vitamin D & B12 pills and, with the last increase of levothyroxine (at 100 mcg now) I have felt so much better in the last three days!!!! So keep at it and you'll get there with the help of the Members here!

sweetsusie profile image
sweetsusie

My TSH level would come back within their "range" and I felt awful. Finally decided, thanks to this blog, to have the test done as early in the morning as possible. That did the trick...my level was way high! This was the TSH test only. Good luck..I can totally relate!

miminaz profile image
miminaz

find a different doctor. My doctor here understands that in order to stave off the immune attack my TSH is best at 1 or just below and it has made a difference. Also, do some research on Hashimoto's and gluten. Getting off gluten entirely made a huge difference for me. Hang on, getting leveled is not a smooth or quick ride but continue advocating for yourself. Also, is your doc a woman? I think women tend to emphathize better with these issues.

Sedum profile image
Sedum

I too have had years of normal tests but a big goitre. In the end the times I have felt best were /are when I properly help myself. Doctors haven't helped.These things all help me. Drinking enough clean water (not tap, and not out of plastic bottles), being strictly gluten free, taking magnesium citrate, good antioxidants, good b complex, getting enough trace minerals (I take something called SpectraMaxx) selenium, K2, probiotic and more can be added. I fall down on being consistent sometimes.. but it has solved lots of problems when I keep to it. 'The vitamin summit' is on the web at the moment with good info/advice if you are interested.

Vera-maureen profile image
Vera-maureen

I have the same symptoms.. Are your thoughts often muddled and foggy? I feel like I'm under a sea of molasses.

phoenix89 profile image
phoenix89

I take 200mcg Selenium per day, and it seems to have reduced my TPO antibodies a lot. There are research papers supporting this. If you begin to supplement make sure you take less than 400mcg, as more than 400mcg can cause Selenosis.

Lynne1980 profile image
Lynne1980

Eventually after paying to see private thyroid dr I have a diagnosis. I have Hashimoto disease. Been put on thyroxin to trial for 3 months. Feel like a huge weight has been lifted.

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