No longer fighting for my health anymore - Thyroid UK

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No longer fighting for my health anymore

Shanza1 profile image
103 Replies

I am new. I feel like giving up. I was diagnosed hypothyroid in 2012 and I take 150mcg Levothyroxine. My GP orders blood tests for all sorts of things but I get no call back so I must be in perfect health. I will just keep taking my Levothyroxine like my endo has instructed me to and get on with my life despite my debilitating symptoms, please see below list:

Swollen neck

Dry eyes

Dry nose

Dry skin

Cramps in legs

Memory loss

Dizziness

Ears ringing

Periods draining the life out of me

Tiredness

Feeling breathless

Constipation

Feeling cold

Toes feeling numb

Nails looking flaky and pink nail plates splitting

I don't expect anyone to reply. I don't expect anyone to relate to me either. I am just writing to say that I feel alone and I probably am alone. I also have iron deficiency which is untreated, folate deficiency, low B12 and vitamin D deficiency.

The GP receptionist says my TSH is over range but my thyroid hormones are normal which is what the GPs go by.

Dec 2017

TSH 4.88 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.4 (3.1 - 6.8)

Thyroid peroxidase antibodies 904.5 (<34)

Thyroglobulin antibodies 4000 (<115)

Ferritin 22 (15 - 150)

Folate 2.1 (2.5 - 19.5)

Vitamin B12 233 (190 - 900)

Vitamin D 60.2 (50 - 75 suboptimal. Advise on safe sun exposure and diet)

Iron stopped in 2016, folic acid started Jan 2018, B12 started Jan 2018, vitamin D 9000IU with K2-MK7 (oral spray) started Sep 2017.

Thank you

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Shanza1
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103 Replies
Kell-E profile image
Kell-E

Seriously, most of us here relate to you! Yes, you must be in perfect health because your doctor doesn't call, lol :)

Do you have any blood work to share?

Shanza1 profile image
Shanza1 in reply to Kell-E

Thank you, yes my thyroid ones are below. The receptionist says my TSH is over range but my thyroid hormones are normal which is what the GPs go by.

Dec 2017

TSH 4.88 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.4 (3.1 - 6.8)

Kell-E profile image
Kell-E in reply to Shanza1

OMG, no wonder you don't feel well...you are very under-medicated!

Marz profile image
Marz in reply to Shanza1

Nothing to do with the Receptionist - unless she's a member here and therefore well informed 😊😊

Foxie1234 profile image
Foxie1234 in reply to Shanza1

So now Dr. receptionists have medical degrees!! They are there to answer the phone, make appointments and give out prescriptions.....NOT to comment on any results your GP has requested......it makes me so angry!

Barann profile image
Barann in reply to Foxie1234

I agree. I phoned about ears ringing which I know is or can be a symptom of hypo and she tells me..."there's no cure for that I will give you a routine appt" so i guess they're now using qualified doctors in the surgeries to make appts

shaws profile image
shawsAdministrator in reply to Shanza1

Normal!!!! Is the receptionist qualified? Endocrinologist? and even they don't actually know how to diagnose results of blood tests.

Why hasn't your doctor increased your dose, so that your actual T3 is nearer the top of the range.

T4 is an inactive hormone and it's job is to convert to the ACTIVE thyroid hormone - the T3 (liothyronine) and it is T3 which is required in our millions of T3 receptor cells. Yours is at the bottom of the range and the reason why you don't feel well as you don't have sufficient to run your whole metabolism, i.e. brain and heart need the most T3.

The fact that your TSH is 1 or lower is also another factor for you feeling ill.

You are undermedicated.

in reply to Shanza1

Is your receptionist a qualified doctor, I don't think so, please don't let her comment on your health.

I only got better by giving up the doctor and having private blood tests. then posting them on here for answers it took 18 months but now after following all the good advice I am well again and feeling great.

Paws21 profile image
Paws21 in reply to Shanza1

My GP only goes off the TSH level. He doesn’t get all the results you have had. Your TSH is high so try taking your meds at a different time and always on an empty stomach with nothing but water for 2 hours. I now take mine on my early morning toilet visit which is usually around 5am then I go back to bed for an hour or two. I feel so much better since I began this routine.

Shanza1 profile image
Shanza1 in reply to Paws21

I take my meds property thank you

You are most certainly not alone! Have a read through some of today's other posts and you will realise that we all have a reason to be here.

On Monday, get in touch with your GP's surgery and get a print out of your test results. Post them here, and members will have a look at them and suggest what you could do to start feeling better.

Sadly lots of GPs do not have great thyroid knowledge, so do not assume everything is as good as it can be. There is always room for improvement!

Shanza1 profile image
Shanza1 in reply to

Thank you, my thyroid ones are below. The receptionist says my TSH is over range but my thyroid hormones are normal which is what the GPs go by.

Dec 2017

TSH 4.88 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.4 (3.1 - 6.8)

Angel_of_the_North profile image
Angel_of_the_North in reply to Shanza1

Stuff the receptionist. You need an immediate 25mcg increase in levo as your thyroid hormones will *still* be normal when Ft4 is 22 and Ft3 is 6.8, and your TSH is 0.2! Ansd get a copy of the Dr Toft Pulse article to show your GP (and the know-all receptionist).

Victoria2603 profile image
Victoria2603 in reply to Shanza1

I would suggest reading Stop the Thyroid Madness. The levothyroxine T4 therapy does not solve your Thyroid issues, the side effects of the medication are as bad as the condition. Join Fb groups for ndt and STTM there is lots of advice on how to get the best medication for you, you might end up treating yourself if the Dr doesn't "get it".. You are definitely not alone, there are thousands of woman in your shoes who are being misdiagnosed and mis-treated .

Please don't give up - ask your GP to do the following nutrients levels blood tests asap:

Vitamin D, Calcium,

B12 and Folate

also Ferritin.

When you phone for the results, ask for them to be read out to you while you write them down ask for the ranges also.

Then post them on here for comment before you see your GP.

You probably have some deficiencies which need prescribed supplements.

Don't give up, keep posting.

God Bless

xXx Mary

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Thank you, my thyroid ones are below. The receptionist says my TSH is over range but my thyroid hormones are normal which is what the GPs go by.

Dec 2017

TSH 4.88 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.4 (3.1 - 6.8)

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Never mind what the receptionist says. It's none of her business. She can tell you GP comment - if that says no appoinment necessary then ignore.

You can see a different GP at the practice. You don't need to tell receptionist what for - don't need to justify your need to see GP.

Either your Levothyroxine isn't working for you as it should or you need an increase in dose by 25mcg and another test in 6 weeks.

Ask for all the nutrients tests as you need these and Levothyroxine dose sorted ASAP.

If GP refuses to treat then you could ask for an urgent referal to an Endocrinologist because of your symptoms. Or speak to Practice Manager.

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Thank you, I know what my vitamin levels are.

Shanza1 profile image
Shanza1

The GP receptionist I spoke to made me feel like a hypochondriac. She told me that with a high TSH and normal thyroid hormone levels I did not require Levothyroxine. I spent a good 3-4 minutes trying to explain to her that I was prescribed it for hypothyroidism and she told me my levels clearly indicate I do not need it! :( Was going so red in the face that in the end I got in touch with my endocrinologist and told him what the receptionist said. He said he will put a stop to this.

Kell-E profile image
Kell-E in reply to Shanza1

Were you taking the 150mcg levo when you had that test? If so, what about an increase, not just letting you keep taking it?

Shanza1 profile image
Shanza1 in reply to Kell-E

I was taking 150mcg at the time, yes. My endo has said my thyroid levels are not following a typical steady pattern on the 150mcg dose and he wants me to stay on it until they do hold steady.

Kell-E profile image
Kell-E in reply to Shanza1

Do you have high antibodies?

Shanza1 profile image
Shanza1 in reply to Kell-E

Yes

Thyroid peroxidase antibodies 904.5 (<34)

Thyroglobulin antibodies 3000 (<115)

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Hashimoto's Autoimmune Thyroiditis

Kell-E profile image
Kell-E in reply to Shanza1

Well, there...no wonder your results are all over the place. You have auto-immune thyroiditis. And your endo has never seen this before??? Yikes!

Shanza1 profile image
Shanza1 in reply to Kell-E

Yes that was what he said. He told me over the phone he had never seen anything like it before and he doesn't understand how my levels could go up and down so much within 6-8 weeks with no change in dose.

Kell-E profile image
Kell-E in reply to Shanza1

It is common. Antibodies attack, thyroid tissue dies, releases its hormone payload, levels go up down, all around...

Shanza1 profile image
Shanza1 in reply to Kell-E

It was almost as if he was saying I am the only thyroid patient he has who has it!! :D Either that or he's ignorant.

Kell-E profile image
Kell-E in reply to Shanza1

Maybe you need to see someone else.

Shanza1 profile image
Shanza1 in reply to Kell-E

Possibly. I was transferred to this one by default; my previous one in Bristol went on maternity leave so I was originally transferred to Cardiff hospital, was told to expect a 6 month wait. By the time my appointment with the endo in Cardiff came I was transferred back to Bristol and given this guy.

humanbean profile image
humanbean in reply to Shanza1

About 90% of people with hypothyroidism in the UK have it because of antibodies destroying their thyroid i.e. they have autoimmune hypothyroidism (also known as Hashimoto's Thyroiditis).

Any endo who claims to have never seen results which fluctuate a lot is either lying, unobservant, has a dodgy memory, or hardly ever sees patients with hypothyroidism.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

No, those results say you need more.

Have your nutrients levels tested asap.

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

They were tested in December 2017, do I add them to post please?

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Yes, next time you do a post it would be helpful if you gave all information in the original post:

Include dates of tests, numbers , ranges and any comments by lab or GP. Also mention new prescription such have as increasea /decrease in dose of Levothyroxine and details of injections and/or supplements tablets with dosage.

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

I have given all information about thyroid results. I did not realise the importance of vitamin and mineral levels and I was not told of the importance of the antibody levels. Thanks

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Are you posting Vitamin & Ferritin levels?

I'm waiting to go to bed!

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Done

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Results of vitamins and minerals added now.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

GP needs to look into Ferritin again, it's getting low.

If he doesn't suggest it you could ask for a Full Blood Count.

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Thanks full blood count only showed above range MCHC. Everything else was ok.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Look up above range MCHC - Google it.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Good - hope he does.

Don't discuss your health with that receptionist again. You do not have to speak to a receptionist about your treatment or explain your clinical needs to them.

Ask your Endocrinologist to post you a prescription or arrange for you to collect one from his secretary.

By the way your TSH needs to be kept under 2 (not within "normal range"). Most on here say less than one.

Your FreeT4 and FreeT3 are too low.

Your TSH needs to be brought lower to also protect your Pituitary Gland from overworking by producing so much TSH.

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Thank you, I will no longer discuss my health with that receptionist again. My endo would like my TSH kept at 2 or below and thyroid hormones within the upper part of normal

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Well he'd better get on with it then - and give you a new prescription to tide you over while he writes to your GP !!

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Unfortunately because of the fluctuating results the endo will not increase my dosage. I did not tell him of my symptoms because when I was undermedicated before I told him off my symptoms and he cut me off saying he wasn't interested in what hypothyroid symptoms I had as he was more interested in what symptoms I would have when I get a TSH of 2 or below and thyroid hormones in the upper parts of their ranges.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

So what dose where you on then? When you had the better results?

Are you taking your Levothyroxine on it's own with water only at least 30 minutes before breakfast and your Vitamins at least two hours later?

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

At that time I was taking 100mcg Levothyroxine, advised by my GP to reduce from 175mcg Levothyroxine without my endo's involvement. I take my Levothyroxine on its own with just water and I leave 1-2 hours before breakfast and vitamins 4 hours after.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Don't leave so long (2 hours) before breakfast - Levothyroxine news stomach acid to work.

Some supplements may be taken two hours after Levothyroxine.

Supplements should be taken as early as possible in the day and with food.

Typo -

that's

needs not news

shaws profile image
shawsAdministrator in reply to Shanza1

If they keep adjusting your dose you will have fluctuating results.

We need a stable dose in whch the TSH is 1 or lower with FT3 and FT4 in the upper part of the Range.

shaws profile image
shawsAdministrator in reply to Shanza1

She has a damned cheek. I know the NHS is running out of money but with Receptionists like that I would complain that you have been kept unwell due to not being given an optimum of thyroid hormones to bring your TSH to 1 or lower. A TSH above the top of the range is not OPTIMAL dosing.

Angel_of_the_North profile image
Angel_of_the_North in reply to Shanza1

Complain to the practice manager that the receptionist is giving medical advice when unqualified. With any luck she'll get retrained or fired.

Foggy73 profile image
Foggy73

You are not alone. I sympathize with you as I have suffered for years with hypothyroidism. You just need to get the right level of medication to feel better. This forum is absolutely amazing. The help and support that I have been given here is incredible and has given me the information I need to go back to my GP and stand my ground. All the best.

Shanza1 profile image
Shanza1 in reply to Foggy73

Thanks :)

Well it sounds like your Endocrinologist knows more than your Dr's receptionist... which is the right way round. It doesn't matter what the receptionist thinks, she has no medical training. You may as well worry about what a bus driver thinks! If she continues to give you a hard time write a letter of complaint to the practice manager. A receptionist is not employed to be rude, or give inaccurate information.

Your TSH is still too high, and your freeT4 and freeT3 are still low in range with plenty of room for improvement on all fronts. If you are on Levo, the aim is to get your TSH to roughly under 1.

Shanza1 profile image
Shanza1 in reply to

Thank you, I take 150mcg Levothyroxine

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

The regular dose can go up to 200mcg. Some people on here are on more.

Some people need some T3 also.

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

I believe I need T3 but my current endo has refused to prescribe it despite my GP and an endocrine multidisciplinary team saying I have a clinical need for it. Whether my endo is right or not I don't know, I just feel so confused about what to do about how to stabilise my thyroid levels.

shaws profile image
shawsAdministrator in reply to Shanza1

The fact that a "endocrine multidisciplinary team saying I have a clinical need for it" (i.e. T3 - you are entitled to have it prescribed). Put up a good case and demand that you are given T3 along with T4.

Another new Research Team have also confirmed that most need T4/T3 combination to feel well.

healthunlocked.com/thyroidu...

Give a copy of the one above and the one below to your Endocrinologist and GP. Especially this one and highlight what Dr Toft states:

healthunlocked.com/thyroidu...

If your doctor doesn't know who Dr Toft is (Endocrinologist/doctor and physician to the Queen when she's in Scotland.

Shanza1 profile image
Shanza1

My endo has said he has never seen thyroid results go all over the place like mine do. I feel like a freak.

in reply to Shanza1

Have you had your TPO & TG antibodies tested? They would show if you have autoimmune thyroiditis, which could explain your fluctuating results.

Shanza1 profile image
Shanza1 in reply to

Yes

Thyroid peroxidase antibodies 904.5 (<34)

Thyroglobulin antibodies 3000 (<115)

in reply to Shanza1

! Looks like autoimmune thyroiditis, also called Hashimotos. That is the most common reason for having an underactive thyroid, so welcome to a big club. You need to try and get those antibodies down, I'm sure plenty of advice will be coming in your direction shortly.

Kell-E profile image
Kell-E in reply to Shanza1

That can certainly happen with Hashimoto's.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

That's Hashimoto's.

And No, you are not a freak.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Maybe , now that you have started your supplements, your Levothyroxine will work better for you??

x🐥

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

I hope so, I just don't know how long it will all take. I want to introduce magnesium and selenium and a B complex but no idea if I need to. I don't want to sound like a walking medicine cabinet.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

You are already taking prescribed Folic Acid 5mg (Vitamin B9) and B12 . So I would be careful about a high dose Vitamin B complex.

Have a read of the ingredients on a Brazil nuts packet. Eat 3 each day.

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

Thanks the B complex is supermarket bought and the recommended daily allowances for all B vitamins on the container is 100%

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

So you'll have more than you need of at least two of them?

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

What strength of Selenium are you considering? Care is needed to not take too much. Some sites say to only take 2 Brazil Nuts. As apparently to say a Brazil Nut contains 50mcg of Selenium isn't necessarily correct because they vary so much in size. There is also some Selenium in othere foods such as eggs and Bananas.

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

I've read that supplementation of Selenium should be only 200mcg and Magnesium 310mg to 320 mg. High doses can be dangerous.

Seaside Susie has Information on supplements and which ones are best to buy. Have a look through posts, until you find a reply from Susie.

x🐥

Heloise profile image
Heloise

Shanza, please watch this series. You need to understand what is happening to you.

brokenbrain.com/02b-gut-brain/

in reply to Heloise

Thank You Heloise for posting this very interesting!

Shanza1 profile image
Shanza1

Also, the endo is only giving me phone appointments and not appointments to come into clinic. He has said he will keep me on his clinic list for 12 months (this was said in November 2017) and if I need to be seen any sooner I can call the appointments line for a follow-up in clinic.

After the palaver with the GP receptionist who was giving me medical advice about my thyroid results I contacted the appointments line to ask to be seen back in endocrine clinic. I was advised to call the endo direct and upon doing so was offered a phone appointment.

Do I need to be critically ill to be seen in clinic? I don't know how it works. Sorry for the rant but I don't understand why the endo would invite me back into clinic when he keeps giving me phone appointments instead. Maybe I'm seen as a problem patient?

Nanaedake profile image
Nanaedake in reply to Shanza1

It seems that as far as endocrinologists are concerned, all thyroid patients are problem patients and if they can fob us off, get rid of us, put us on anti-depressants or make us think we are mad or hypochondriac they will. Mainly they are diabetic specialists and have no up to date training in anything thyroid related it seems. Google your Endo and find out if he's a diabetic specialist or a thyroid specialist.

Peanut31 profile image
Peanut31 in reply to Shanza1

Shana1

Your not alone in feeling how you do, hence why there are posts daily on here just like yours.

This forum is fantastic at supporting us and offering advice.

I’ve got Hashimoto’s too, don’t rely on your GP or your Endocrinologist to help, they all seem to be relying on guidelines which are out of date despite patients feeling so ill.

This was a very expensive lesson I have recently learnt.

Don’t let them label you with depression or anxiety or fob your off with antidepressants.

They tried that we me, but, I refused them and informed them I was depressed due to Hashimoto’s symptoms, and if they felt like I did, they would be depressed too.

As for the receptionist, someone has already pointed out they are not medically trained to give you any advice or to decide when and if you get to see a doctor.

I have learnt from this forum far more information than my what my private Endocrinologist offered.

It is important to make sure all your vitamin levels are correct to help your condition.

Vitamin D

Iron

B12

Vitamin C

Due to the incompetence of my private Endocrinologist whom refused to prescribe any medication, despite confirming I have Hashimoto’s, I have taken the decision to self medicate.

Awaiting the medication to arrive.

With Hashimoto’s it is advised you go gluten free. This has really helped me (some find it doesn’t help) and I’ve given up the fizzy drinks too.

Try to avoid high sugar foods as well.

I also take 200mg of selenium a day which I believe really helps

Best wishes

Peanut31.

Peanut31 profile image
Peanut31 in reply to Peanut31

Shanza1,

Apologies spelt your name wrong.

Peanut31

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

Don't take it personally. There are lots of us patients. Doesn't seem to be enough Endo's to go round!

Many come on here who have never seen an Endocrinologist and only get treated by GPs - some with disastrous consequences.

Did you have any illness about a week or so before your last blood test such as a gastric bug ?.Any Diarrhoea and / or vomitting?

Shanza1 profile image
Shanza1 in reply to Mary-intussuception

No bugs

Mary-intussuception profile image
Mary-intussuception in reply to Shanza1

No bugs - but did you have either of the other symptoms? Any loose stools?

SlowDragon profile image
SlowDragonAdministrator

Considering that there are 2.2 million people in the UK on Thyroid replacement hormone and 90% have Hashimoto's it would be nice to find an endocrinologist who has some idea of how to treat

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

With Hashimoto's we must get vitamins optimal first and Levo dose increased to bring TSH down to around one and FT4 towards top of range

Highly likely to have to be strictly gluten free too

If FT3 remains low, like many with Hashimoto's, you may need addition of small dose of T3

Ask Dionne at Thyroid Uk for list of recommended thyroid specialists

Sv_cy profile image
Sv_cy

Hi, I have also Hashimoto`s and I am also in the same situation that the doctor says that everything is fine. So now I help myself :-)

Please read very usefull information on

hypothyroidmom.com/the-secr...

Your FT4 and FT3 is very low. It must be in high range. You have to take more Levothyroxine and ad some T3.

You have to take

- selenium 200mg TOGETHER with vit E (it is working only together!!!)

- vitamins B1,B2,B3,B5,B6,B12

- Vitamin C 1000mg

- Magnesium

- Chromium

- CoQ10

Ashwagandha, Ginseng, Ginger root, Curcumin help to reduce antibodies. But gluten and lactoza free diet is very important.

For leaky gut I take L-glutamine, probiotics, Lactoferrin.

With such results FSH, T4,N3, high antibodies for sure you have problem with adrenal glands. You have to make tests and

Please read also informationon below links and it will help you to understand a lot of things

draxe.com/hypothyroidism-di...

thyroidnation.com/questions...

stopthethyroidmadness.com/a...

stopthethyroidmadness.com/a...

stopthethyroidmadness.com/a...

stopthethyroidmadness.com/h...

Hi not sure if anyone has mentioned that your GP and receptionist are idiots? TSH is far too high and under NICE guidelines (I’ll find a link and post) once on medication if should be lower than 2.5. There is a great response to another post today by Clutter who also sets out Dr Tofts guidance on TSH. You need a dose increase and lower TSH and higher T4. Agree with the comments about not talking to receptionists about health care regardless of how well informed they may be. Good luck!

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

helvella profile image
helvellaAdministratorThyroid UK in reply to

Shingleway,

Just to be absolutely clear - what you have linked is a whole series of Clinical Knowledge Summaries. They were inherited by NICE and moved to their website. NICE seem to be responsible for them. However, they do NOT constitute formal NICE guidelines.

NICE are in the process of developing full guidelines.

in reply to helvella

Hi that’s true and let’s hope that the NICE guidelines improve!

Geo-Lesley profile image
Geo-Lesley

Hi, Sorry you are feeling so unwell. Just a couple of points I'd like to raise.

When you take your thyroxine do you leave at least an hour before you eat or drink?

Have you cut down on pulses and oats? I've found too much roughage can strip my thyroxine out leaving me feeling unwell.

If you take vitamin D do you ensure that it is D3?

Cut out all sugar. Sugar and stress are the biggest no nos for me. It exacerbates my symptoms.

Write to the practice manager and make a formal complaint about the receptionist. Unless they are a qualified doctor in their own right they have no right to tell you what is wrong or right with you. I had the same and once I complained I was treated properly.

I hope you find relief soon. You are NOT alone. We have all been where you are now and you WILL get through it x

Shanza1 profile image
Shanza1 in reply to Geo-Lesley

Yes I take my Levo properly and I take D3

Mary-intussuception profile image
Mary-intussuception in reply to Geo-Lesley

Geo-Lesley

Why cut down on oats!

Porridge - an excellent start to the day.

A Banana, bowl of porridge and glass of water (or 2) is an ideal breakfast??

Geo-Lesley profile image
Geo-Lesley in reply to Mary-intussuception

Thyroxine absorption can he hampered by too much fibre. By all means have oats but they are better taken later in the day.

Consumption of certain foods may affect levothyroxine absorption thereby necessitating adjustments in dosing. Soybean flour, cotton seed meal, walnuts, and dietary fiber may bind and decrease the absorption of levothyroxine sodium from the GI tract

HypoTrish profile image
HypoTrish

Shanza1

Why should you give up on you? even if everyone else seems to want to. You are valued you are just very unwell. This is going to be a long and at times difficult journey. Take all the advice you can from this wonderful community allow yourself to be supported by us all. Oh and tell people who step over the mark i.e. receptionists that you don't need their opinion you just need them to do their job. Politely of course and with a sweet smile on your face!

HypoT

teen17 profile image
teen17

I no just how you feel so don't think your alone. Every time l start to feel better my hair feels nice my nails start to grow my symptoms seem to be gradually getting better then bang I'm back to square one again.

What l would like to know is who desides what the range of blood levels should be?? Just because are level is with in the so could guideline it doesn't mean that's where it should be. Perhaps some of us with hypothyroidism need to be at a higher level than the so called guidelines. And people with hyperthyroidism in a low than the normal level.

Surely we should be treated as individuals and be prescribed the dose we need to feel better not when a blood test looks "normal". Sorry for the rant and taken over you post.

Petronella profile image
Petronella

Your message makes me very angry! First, the doctor should have got back to you about your results. Second, the receptionist should not be interpreting them for you. Third, you sound extremely depressed, and that is a major symptom of thyroid deficiency! Please, get back to your doctor and ask to be referred to a specialist, and don't be put off by anyone assuming you are a hypochondriac! (At one time, thyroxine was used as a slimming aid, and some medical people who should know better still think those who want it, or ask for their dose to be upped, are fatties who are too lazy to diet or exercise properly!)

GardenerSue profile image
GardenerSue

Hi as everyone has said you are not alone. Battling with the GP over medication for hypothyroidism has frustrated me for years. Even after I saw a consultant endocrinologist they still queried my levels! The receptionist is not qualified to make a diagnosis and if you have no joy with the GP ask for a referral to see an endocrinologist. If your TSH is raised as your levels show , it is indicating that your thyroid is not producing enough thyroxine and the Pituitary gland is producing more TSH to try and stimulate the thyroid into action. The consultant pointed out to me that the levels deemed normal are based on someone without thyroid disorder. Normal differs between individual sufferers and the replacement provided by Levothyroxine is not as efficient as that produced naturally in the body. Therefore it is very likely that some of us need high doses of the drug to maintain us at a satisfactory level. I function best with a Free T4 of between 21 and 24 so it is likely with your raised TSH that you need more Levothyroxine. I currently take 200 mcg but have been on a higher dose. I’m about to request another blood test as my free T4 had dropped to 20 when it was last tested and I believe it’s probably lower now. If my suspicions are correct I shall bypass the GP and make contact with the consultant as I’m not prepared for another battle. GP’s ( in my experience) don’t always appreciate their patients having some knowledge about their condition . I’m not sure how old you are or if male or female but there are other things that can produce similar symptoms e.g menopause. The combination of the two is not helpful! In conclusion , see your GP and ask for a referral because you cannot carry on the way you are. Good Luck!

Karen154 profile image
Karen154

I can relate everything you've wrote as sure every thyroid patient can at some point in their lives. I'm not the best to advise on bloods but it does appear that your under treated and vitamin deficient.

I know how frustrating it can be when your getting anywhere with GP's.

Why don't you start by booking a DR appointment and you just can't carry on like this.

My DR prescribed Vit D and iron and increased Levo medication and I'm very bright and have energy now.

But I'm still having thyroid problems so it's not straightforward to treat.

Jtaylorhoo profile image
Jtaylorhoo

Hello Shanza1. No matter how much you don’t expect anyone to relate to you, believe me everyone on this site will. You will receive loads of help from the brilliant people on here, as did I. I’ve never looked back since finding this website and am extremely grateful for all the help I’ve gotten from it.

guruman61 profile image
guruman61

you may need a diff thyroid. i tried that and it never helped a thing. i now take armour thyroid or naturthroid and now i can get out of bed easier you need tests for free 3 and your free4 thyroid in your blood

Don't give up!!! Thyroid disease is a lifetime problem. Be patient 😀

Geo-Lesley profile image
Geo-Lesley

Do I take it from the excessive use of the question mark you don't understand my last post?

The original post was regarding someone else and their experience. I'm happy that you seem to have no ill effects with regard to your diet but this post isn't about you.

If you are interested in the effects that some substances that have an negative effect on the absorption of thyroxine then a quick search will bring up a variety.

For instance;

ncbi.nlm.nih.gov/pubmed/281...

ubplj.org/index.php/wlmj/ar...

thyroiduk.org.uk/tuk/resear...

btf-thyroid.org/information...

mayoclinic.org/diseases-con...

Please don't assume that a particular diet which is adequate for you should be followed by all.

It may be that you have been over prescribed thyroxine but by taking so much soluble fibre in the form of oats that effect has been negated.

Mary-intussuception profile image
Mary-intussuception in reply to Geo-Lesley

Nothing to do with oats

LindaC321 profile image
LindaC321

Hi. I have struggled with thyroid too.

TSH is a nonsense.

Get T3, T4 & free T3

AND check reverse T3.

Also...

Most docs/End is go by Taj but most patients need to be above the parameters to be symptom free.

Slightly adjust levothyroxine up, wait 3 months and continue until symptom free.

If you start getting jittery or anxious or you get sloppy poo or different hand/finger scales patches etc

You may be too high. You will know the sweet spot when you feel back to you.

Please see doc re: ferrous fumerate for iron levels.

Try & eat nuts, seeds, veg if you can.

If low thyroid avoid peanut butter as brings down

Check iodine levels as affects thyroid.

Himalayan pink salt instead of white salt and pink salt baths help

Milk, white fish & seaweed also contain iodine.

Hope this helps! X x

Lrhsal profile image
Lrhsal

You must ring surgery to check when bloods come back. Even if they say in range no further action book appointement with your doctor to discuss. Tell him you want to up your dose.

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