Please help 😬😬: I posted in here a few weeks... - Thyroid UK

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Please help 😬😬

melanieee profile image
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I posted in here a few weeks ago and I have had the private blood tests done . I am underactive and on 150mg levothyroxine. I fell awful and have done since starting the medication .

I can’t get to my gp for three weeks as there are no appointments . Could any one pleas help me with these results?

Thank you 😊

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melanieee
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SeasideSusie profile image
SeasideSusieRemembering

melanieee

One of your posts says that you stopped taking your Levo. Obviously you were on it when you had these tests done, but had you been back on it continously for 6 weeks?

Your TSH is far too high, it's over range. Your FT4 is 50% through range and FT3 is 38% through range. One might expect to see lower FT4 with such a high TSH. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

**

However, both of your thyroid antibodies are raised and this means that you are positive for autoimmune thyroid disease aka Hashimoto's which is where the thyroid is attacked and gradually destroyed. Fluctuations in symptoms and test results is common with Hashi's. This may account for your strange results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here, however there are no guarantees but it's worth a try for 3-6 months.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies.

**

Your ferritin is in range but a bit low. For thyroid hormone to work properly (that's our own as well as replacement hormone) it's said that ferritin needs to be at least 70, preferably half way through range.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

apjcn.nhri.org.tw/server/in...

**

Is your Active B12 78.3? If so then that's just about OK as anything below 70 suggests testing for B12 deficiency. I'd want mine higher.

Folate is over the low limit but on the low side.

If these were my results I'd supplement with a good B complex which will raise folate and also help raise B12. I'd consider Thorne Basic B. Some people like Igennus Super B.

**

Vit D at 31.25 is dire, just 1.25 points away from where NICE Clinical Knowledge Summary suggests loading doses be prescribed - see cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

You could ask yor GP, or you could buy your own supplements and follow the suggestion for loading doses, ie. 5,000iu 3 daily for 8 weeks then retest.

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. Once you've reached this level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

There are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

As you have Hashi's then for best absorption an oral spray or sublingual drops are recommended. BetterYou do an oral spray, sublingual drops brands are Natures Answer and Vitabay.

**

CRP - I expect Medichecks have given comments about this. It is an inflammation marker but I don't think so in your case, ferritin is usually high when there is inflammation. It's possible that the Hashi's has caused this.

**

What brand of Levo are you on?

melanieee profile image
melanieee in reply to SeasideSusie

Wow thank you so so much . What an amazing reply . I have just meant more from you from one message than 15 years of doctors . I am a bit tearful as I have been telling my doctor for so long how ill I feel and he just ignores it 🥺. I have been on mercury as teva made me feel worse but it’s just changed to activis . I want to change to ndt if I can but my doctor won’t entertain it . I really am at my wits end 😩😩😩xxx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

You could give Actavis a go, you might do well on it. I've been on Actavis for donkeys' years, it's on the pharmacy record to give me only that brand. Northstar and Almus are Actavis rebranded for Lloyds Pharmacy and Boots, so sometimes they get substituted but they are the same tablets, it says Actavis on the blister pack inside the box.

You can always consider NDT further down the line. You most likely wont get it on prescription, but it's possible to obtain Thai NDT without prescription and it's reasonably priced and many members get on very well with it.

melanieee profile image
melanieee in reply to SeasideSusie

Just an update 😢 my doctor he told me that I don’t have hashimotos. He said my thyroid is in normal range and the vit d is a little low but nothing that concerns him 🤦‍♀️Xx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

"my doctor he told me that I don’t have hashimotos."

Well, that just shows how ignorant he is. But maybe he wanted it called "autoimmune thyroid disease" or "autoimmune thyroiditis" - all exactly the same thing, Hashimoto's just isn't what they like to call it in the UK. But you have it, absolutely no doubt.

You could point your GP in the direction of the NHS website which says (and calls it Hashimoto's!):

nhs.uk/conditions/underacti...

Causes

- Underactive thyroid (hypothyroidism)

Immune system

An underactive thyroid often occurs when the immune system, which usually fights infection, attacks the thyroid gland. This damages the thyroid, which means it's not able to make enough of the hormone thyroxine, leading to the symptoms of an underactive thyroid.

A condition called Hashimoto's disease is the most common type of autoimmune reaction that causes an underactive thyroid.

It's not clear what causes Hashimoto's disease, but it runs in families. It's also common in people with another immune system disorder, such as type 1 diabetes and vitiligo.

**

"He said my thyroid is in normal range"

FT4: 17 (12-22)

FT3: 4.51 (3.1-6.8)

Yes, we can give him that with your FT4/FT3 but it doesn't alter the fact that they are low in range.

TSH: 5.62 (0.27-4.20)

Ask him what part of "in normal range" is a TSH which is over range. Or can't he do the maths?

So your TSH is over range and needs reducing. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. Point him in the direction of the article written by Dr Toft, leading endocrinologist and past president of the British Thyroid Association, which was published in Pulse magazine (the online magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

You can also refer him to NHS Leeds Teaching Hospitals who say on their website:

pathology.leedsth.nhs.uk/pa...

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .......... This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L .......... Likely under Replacement

**

the vit d is a little low but nothing that concerns him

Of course it doesn't concern him, he's not living with such a dire Vit D level, and he doesn't care much about his patients by the sound of things. Just sort this yourself. All the information you need to do this is in my previous post. I couldn't even be bothered to go and see my GP when my Vit D level was 15nmol/L. I sorted it, 2.5 months later it was almost 200nmol/L, now I maintain it around 150.

**

I lose a little bit more respect for doctors every day :(

**

Can you see another one about your thyroid results if this one still wont budge?

melanieee profile image
melanieee in reply to SeasideSusie

I am sat here in tears again and just dumb struck . Thank you so much for such a lengthy response again . I am going to read it all and print everything out tomorrow and see if I can make sense of it . My brain hurts and I just can’t take any of this in . He didn’t like the fact that I had the tests done away from the nhs 😩😩xxx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

Sending you a virtual (( hug )).

Take your time, we all have hypo brain and need time for things to sink in.

He didn’t like the fact that I had the tests done away from the nhs

You could suggest he does his own :D and you wouldn't need to do private tests if he took you seriously!

melanieee profile image
melanieee in reply to SeasideSusie

He wouldn’t do them . He said the NHS won’t test for any of the things I had asked for so that’s why I had them done . This is all too much . I read things and understand it and then I forget what I have read and get so confused with it all . I have a grammar school education and have gone from being healthy and happy and out going and confident to being a shell that breathes . I see him every 4 weeks . I just feel like a burden 😢😢😢😢😢 my son has just told me that the gp has said I am fine so I must be fine . I don’t know why people don’t understand 😩😩😩😩xx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

my son has just told me that the gp has said I am fine so I must be fine

That's just ignorance. He obviously wouldn't be saying it if he was in your shoes. Let's hope he doesn't develop it when he gets older, but on the other hand it can run in families..............

You're not a burden, you are ill, and this is the place where we all understand that. Come and talk to us and don't let your son upset you (I know, easier said than done :( )

melanieee profile image
melanieee in reply to SeasideSusie

I am in bits . Thank you so much . I just feel so ill day in and day out and work full time and just feel like I am banging my head against a brick wall 😔😔😔xxx

melanieee profile image
melanieee in reply to SeasideSusie

Hello again 😊 I spoke to a lady in America last night who runs a huge group with people that have all sorts of thyroid problems . She has said that she can 100% say that I have hashimotos from my blood results . She said that my gp is a moron not to be acting on my blood results as they are of concern . She has also suggested u have a thyroid ultrasound. Do you please know if anywhere close to me that could do this? I am in Shropshire . Thank you 😊 xx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

She has said that she can 100% say that I have hashimotos from my blood results . She said that my gp is a moron not to be acting on my blood results as they are of concern

So she's confirming what I said.

She has also suggested u have a thyroid ultrasound. Do you please know if anywhere close to me that could do this?

No I'm afraid I don't. But there are private hospitals around Shropshire, Nuffield I think, or BMI or Spire. Check them out.

melanieee profile image
melanieee in reply to SeasideSusie

Yes she confirmed . Thank you 😊 it’s been a very strange few days trying to get my head around all of his and still not knowing what to do next as my gp won’t do anything . I have looked at those but can’t find anything . Probabaly easier for me to ring them 😊thanks again for all of your help . I went into the phone call being more prepared xxx

melanieee profile image
melanieee in reply to SeasideSusie

So latest update .. can’t get a private scan without a gp referall . 🤦‍♀️🤦‍♀️ Just off to look for a brick wall to bang my head against xx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

Is it possible for you to see a doctor privately to arrange a scan?

Or - just had a quick Google and someone asked this 4 years ago

healthunlocked.com/thyroidu...

There are a couple of scan clinics mentioned in that post. Another Google came up with this

google.co.uk/search?source=...

Have a look through some of the links, see if you can travel to any (I haven't checked them out to see if you need a referral).

melanieee profile image
melanieee in reply to SeasideSusie

Hello again . I use wanted to say thank you so so much for all of your help and replies . It’s so refreshing to speak to someone that understands what I am going through . I am struggling as I only have my mobile phone to look things up on so my son has ordered me a laptop so I can get all of your information printed and research more . As soon as it’s here tomorrow I am going to spend the day going through all of you’re information and links . Thanks so so much again 😍xx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

You're very welcome :)

I hope you can get a scan sorted, let us know how it goes.

melanieee profile image
melanieee in reply to SeasideSusie

Thank you . I will 😊xx

melanieee profile image
melanieee in reply to SeasideSusie

Hi so sorry to bother you again . I am really really dizzy and lightheaded and my chest pain has become worse over the last few days . It’s stopping me being able to be able to do my normal activities. Is this normal ? Is there anything I can do for myself to help? I feel dreadful 😩😩xx

SeasideSusie profile image
SeasideSusieRemembering in reply to melanieee

Hi melanieee

I can't say whether this is related or not. Dizzyness and lightheadedness can be due to other things. As it has become worse, I think I would ring the out of hours service/111 and take their advice, or if you feel it's warranted get yourself off to A&E.

melanieee profile image
melanieee in reply to SeasideSusie

Thank you 😊 xxx

Greekchick profile image
Greekchick in reply to melanieee

Dear Melanieee,

I read your post and feel your pain. I just had a TT and am recovering, (and get great advice from this forum for that) but I had the same experience as you when I needed back surgery years ago. I was written off as a middle aged woman who complained all the time for over a year. I couldn’t walk 10 feet but I was a complainer. Go figure. I was sent off with a prescription for Dilaudid.

Finally I was sent to a doctor who actually took the time to diagnose me and I needed major surgery which I did receive.

It is a terrible feeling to be ignored and belittled by a physician. Can you bring someone with you to the doctor to advocate for you? Even just to be there for support? Doctors behave differently when patients are not alone, particularly when patients are women.

I am sending you positive thoughts and good wishes and hope you get some resolution to your problem.

melanieee profile image
melanieee in reply to Greekchick

Thank you for your reply 🤗 15 years I have had this to deal with and the older I get the worse it gets . I am frustrated beyond belief . I have taken my husband with me and still he was the same . I really don’t know what to do xxx

Greekchick profile image
Greekchick in reply to melanieee

I don’t know what to say. I know how hard it is to find a doctor in the UK based on what I read here and I live in Canada, and it’s a little easier here to change if you are unhappy. I go private here for certain things because I get listened to better sometimes . All the best to you. 🙏🏻

melanieee profile image
melanieee in reply to Greekchick

Thank you 😊 xxxxxx

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