Any one able to understand my blood results from Aug 18 - Feb 19 , have Self funding appt with Dr Mukhergee at spire in 3 weeks 🤓...

photobox.co.uk/album/558314...

Left pic is me now after 6 months levothyroxine treatment 14st 4 (weight)

Right pic is me in August 18 just before levothyroxine treatment 12st 6 (weight)

Any other info required please ask and explain reasons please.

[Hidden]

I'm hypothyroid in both pictures I'm trying to show the worsening symptoms on the outside after the reuptake of levothyroxine in August 18 ,dosnt make sense to me either?

Have added a photobucket link to my bloods. August thyroid is before meds and due to the severe side effects stopped meds again 15th jan 19 .

Can see the change in thyroid levels before (August),during treatment (Nov ) and after 4 weeks no treatment (feb).

Hard trying to it togeather as this been me pretty much since 2012 xx

[Hay2016]

The first photo your ferritin is very low. Has this ever been addressed? The folate and b12 needs increasing too.

The cholesterol ones are high because of the hypo. Obviously the TSH is raised in all so you were never on high enough dose. Did you try changing brands? Can you remember the brand you took as some really don’t agree with people.

[Hidden]

At first, I thought the picture to the right was the new you (after being on thyroxine for six months) and was going to congratulate you on the weight loss when I realised you are actually heavier AFTER being on thyroxine...

It's impossible to say what happened and there are many possibilities. Many patients seem to be on too low a dose of thyroxine as most doctors seem to think a TSH "anywhere in range" is fine. It seems few doctors test other and more important labs, such as the actual thyroid hormones - free T4 and free T3. The latter is especially important as it's the active hormone which carries out most if not all of the metabolic activity at cellular level. But many doctors won't test free T3 levels, claiming that as long as you're on thyroxine it will automatically be converted to T3 as most of that conversion takes place outside the thyroid gland itself.

However, many patients on thyroxine have an impaired T4 to T3 conversion, leaving them hypothyroid even on high doses of thyroxine. Those patients often do better when T3 is added to the mix, either synthetic T3 or natural desiccated thyroid.

So you'd need to know what your free T3 and free T4 levels look like as they are more important than the TSH. Without them, there is no way of telling if you're taking enough thyroxine (free T4 levels) or if you are converting enough of it to T3 (free T3 levels).

[SlowDragon Administrator]

Your high antibodies confirm you have autoimmune thyroid disease also called Hashimoto's

Vitamin D, folate, B12 and ferritin all need retesting. Likely to be even worse than August results

Thyroid hormones need good vitamin levels

What vitamin supplements are you currently taking?

Vitamin D needs improving to around 100nmol

Ferritin was extremely low. Need full iron panel testing for Anaemia. Likely need ferrous fumerate supplements or possibly an iron infusion

B12 was too low in August

Folate was below range.

Both need supplementing to bring near top of range

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

You may also need sublingual B12 for a few months

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

What dose and brand of Levothyroxine are you currently taking?

You need coeliac blood test, possibly endoscopy

Regardless of results likely to need to try strictly gluten free diet

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. Dairy is second most common.

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

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

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

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

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

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

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

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

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

[Hidden in reply to SlowDragon]

Hiya ,thanks for that ,I'm not currently taking any supplements as told by my gp that they r satisfactory 😆.

The last time I was prescribed ferrous fumarate 210mg x2 daily x 8wks was April 2017 along with 5mg Folic acid x 1 x12wks .

My levothyroxine brands prescribed are

25mcg Wockhardt.

50mcg Teva

100mcg Actavis,

The private endo asked if my doctor had tried me on one brand only ,My GP completley unaware and never been mentioned to me in my 7 year struggle ?

mentalhealthdaily.com/2016/...

This answered everything I had been going through,

After taking it to Gp in jan 19 ,she admitted she had heard of all the side effects and had never come across them before . As I handed her yet another suicide note ..

Yes you guessed it urgent referal to mental health team once again .

On appt with mental health on 24/2/19 I asked if she knew anything about hypothyroidism and she shook her head , totally oblivious . Eyeroll🙄

She wrote down my diagnosis and began asking about my child hood and places I'd lived in the past ...

I had to stop her and gave her a copy of my referal from endo and said was waiting for T3/t4 prescription to see if it helped with my symptoms 1st .

She agreed no amount of psychiatric medication will improve pain and fatigue.

Been on 120mg duloxetine for 18months and yes it stops the crying episodes and masks the frustration at times but that's all .

I know everyone's different and reacts to things differently..I'm pretty strong most days but it's just a existance and not a life 😏.

Many thanks Tam x

[SlowDragon Administrator in reply to Hidden]

First steps are to get on ONE brand of Levothyroxine. Unless you suspect dairy intolerance then probably best to avoid Teva brand.

Getting TSH down under 2

Vitamin levels OPTIMAL, which frequently means we need regular supplementing.

And thousands of us find strictly gluten free diet helps or is essential. You don't need any obvious gut symptoms

Getting FULL Thyroid and vitamin testing is frequently the first step to working towards recovery

Many of us struggled for years until coming to this forum and realising time and time again that poor vitamins are frequently a hidden problem and that gluten intolerance is very very often an issue

[Peanut31]

Hi

When I saw your post I quickly looked at it and thought the right hand photo (with the sleeveless muti colour top) was whilst on Levo.

Am I correct the one on the left is your current photo on Levo.

Anyway, I’ve looked on your attached blood results and I can’t see any results for T3, am I correct?

As your seeing a private Endo have you asked him why he’s not testing T3. If he gives you a load of bull that T3 isn’t important, blah blah blah. I would part company with him quick.

He will also be playing a rollercoaster game with your TSH results as well, as I bet he is obsessed with TSH.

As you have Hashimotos and others have suggested, try strictly gluten free. I too have Hashimoto’s and it’s helped me, been GF since September 2017, it will reduce your antibodies and the thing I noticed the most was I no longer suffered bloating.

As others have said Levothyroxine doesn’t work for everyone, it didn’t me, so I now self medicate with NDT.

I purchase this privately and I’m in control of my own health, doing blood tests privately when needed.

I saw a private Endo and he was as much use as a chocolate fire guard, he also didn’t test T3 either, I spend hundreds of pounds on him, hell bent on keeping me as I was and not wanting me to improve.

What dosage amount of Levothyroxine are you on?.

Best wishes

Peanut31

[Hidden in reply to Peanut31]

Hiya , I know shocking arnt I and a weight gain of nearly 2stone in 5 months.

The weight that dropped off me after stopping levo in 17. Not a good look when your single lol ,anyway yes it appears levo gives me moon face , water retention, pregnant looking belly, no relief from pains or fatigue at all ..

The private endo I saw at spire 15/2/19 had referal letter from my Gp ,never asked any questions just a letter to my Gp requesting I try t3/t4 combo .which has been requested on monday but denied by Gp yesterday.

Gp referal to nhs endo has been sent .

My mother has also booked another private appt with nhs endo for 18/3/19 as she is now worried out of her mind about me .

Answering your question I was originally on 150mcg levo up till nov17 .rocking in a mental health hospital or taking the risk of heart attack from hypo ..

Decided to take the risk and stopped the levo 😑

Felt mentally better and swelling gradually subsided ,had a few months when I felt normal ...but it wasn't to last ..

Doc wouldn't give me pain or anxiety meds in August 18 unless I treated my thyroid AGAIN ...I got up to 125mcg in December and I can honestly say hand on heart I don't know how I am still alive due to SI.

Am just trying to listen to people and work on a way forward as you don't know how strong you are unless being strong is all that's left of me .

Many thanks Tam x

[Peanut31 in reply to Hidden]

Hi

Moon face and other symptoms can also be cortisol issues.

You don’t need anxiety medication, its all related to your thyroid.

What ever you do, don’t accept anti depressants. You need to address your thyroid issue, once you do, everything will start to resolve its self, but, you have to have patience.

Maybe it would be a good idea to test your cortisol levels via a saliva test and include DHEA as well. Thyroiduk offer this.

Why don’t you ditch the NHS and private Endo and self medicate on NDT? You could give it a try.

Stopping Levothyroxine isn’t a good idea as your health will decline.

I speak from experience, I got to 125mcg of Levothyroxine and I felt awful, I started to think I would never get better and I was useless to my family.

Those thoughts frightened me, so, I decided to stop Levothyroxine.

I did feel better for a few days then oh my word, the symptoms hit me like a brick wall.

Luckily, I had a back up plan, NDT and once it arrive I was straight on it slowly increasing.

I’m doing well on it. I’m increasing slowly, but, with the help of this forum I’m getting better.

It’s your health, your life and you need to take control of it.

The NHS procedure on thyroid testing is out dated and narrow minded.

You will be very lucky if you get awarded T3 on the NHS, many patients whom have been on it for years are being told they can no longer had it because of the price increase. They think T4 (Levothyroxine) is adequate for us all.

You can purchase T3 privately cheaper than the NHS get it, but, I would try NDT that has T4 and T3 in it.

First you need to sort your vitamin levels and look at cortisol levels, get all that sorted and your thyroid journey should be a lot easier.

Listen to the advice on here and put this into practice.

The experienced members have definitely helped me gain my health back.

You must try gluten free.

Best wishes, take care

Peanut31

[shaws Administrator]

You are not alone and when people complain of weight gain when on levothyroxine but the professional lays the problem upon the patients' shoulders and their diet. I thought you would find the following of interest:-

stopthethyroidmadness.com/h...

[Hidden in reply to shaws]

ThankU so much ,as an administrator are u aware of this

mentalhealthdaily.com/2016/...

No one ever told me 🤨

Explained a lot and am learning to be fully armed with facts before putting another t4 tablet in that's for sure 👏.

I'm on a Mission now 🚀

Many thanks Tam x

[shaws Administrator in reply to Hidden]

Maybe you'd like to read the following by one of our Advisers (now deceased) and he only took one blood test from his patients for the initial diagnosis and thereafter it was all about increasing small doses of NDT or T3 until they were well. He'd never prescribe levo. Read 'Safely Getting well'.

naturalthyroidsolutions.com...

[Hidden]

What symptoms are you experiencing? Is your weight gain mostly around your tummy? Do you have insomnia? Suffer with high BP, excessive facial hair, stretch marks, bruise easily, have thin skin? With rapid weight gain it could be high cortisol causing Cushing's. Ask your GP or Endo to do an early morning blood cortisol, done between 8-9am.

[Hidden in reply to Hidden]

Hiya , have decided to make notes of the questions I need to ask her ,hopefully it's standard practice and a obvious next avenue..

It's all very interesting to follow and a absolute mine field ..

Not capable of much but the guidance and care on This site is truly lovley

Many thanks Tam x

[SlowDragon Administrator in reply to Hidden]

Need to start improving your vitamin levels, really need these optimal BEFORE slowly adding and T3

Getting a Coeliac blood test online, (just to rule it out) before starting on strictly gluten free diet too strongly recommend. At least for 3-6 months. If it helps stick with it

Daily vitamin C to help support adrenals and can also help improve iron absorption