ME/CFS advice amongst other things...

[joey82]

Hi,

I'm sure some of you will know me and my story from my posts on this forum. I have hashimoto's hypothyroidism and suffered for over 4 years now and the situation is getting worse. It's destroying my life and my beautiful family, the mental strain over the last 2 weeks has been unbearable and I feel it won't be long before I have to section my self or just call it a day.

I'm sure we all know the symptoms of being hypo, so I won't bore you with that.

I am going to see a councillor next week and hopefully that can help with my mental health problems.

One of the issues is over the last 2 months I've had a constant run of colds and flu like bugs and they have made me feel exhausted. It has made it really hard to see where I am with my thyroid symptoms. I caught my latest bug nearly 2 weeks ago and I have been absolutely exhausted at times. Even during my worst thyroid days I would still get up and do stuff and push on through. I feel mostly free of my cold symptoms now, but I am so tired.

I have concerns now that I have ME/CFS and after reading the NHS website I certainly fit the symptomatic profile along with causes.

4 weeks ago I upped my T4 dose from 175 a day to 175/200 on alternating days to get my T3 in the upper 75% of the range. My last bloods through medichecks done with the advice from this forum;

TSH: 0.02 (0.27 - 4.2)

FT3: 5.5 (3.1 - 6.8) 68% of the range

FT4: 19.4 (12 - 22) 78% range

I am awaiting the result of my Di02 test from my endo.

I went for a ultra sound scan the other day with London Ultra sound and I was told that my thyroid is in relatively good order with no active inflammation and approximately 30% - 20% destruction of the cell tissue.

I supplement every day with magnesium, D3, fit C, K2, B complex vitamin, folic acid and liquid ferritin every other day. My last results where;

Folte serum: 10.47 ( range greater than 3.89)

B12: 143 (range 37.5 - 150)

Vit D: 66 which puts me in the adequate range. I have increased me Vit D intake since this result to get into the optimal range.

My TPOab anti bodies are elevated and my TGab are below range.

I try and exercise every other day, but it's been nearly impossible the last 2 weeks.

3 x Cortisol blood draws have all been in range. I have undertaken SIBO test, cortisol saliva test and a comprehensive stool analysis with Genova to look into and digestive issues. I am GF, and don't eat vegetable oils, processed foods or soy. I eat a varied diet mainly built around whole food.

I am going to see a new Dr in 7 weeks who specialises in integrated medicine and is on the approved Thyroid UK list. I have not been happy with my endo who I've been seeing the last 2 years, as there has been no real positive result. He is now of the opinion that I will be like this for the rest of my life.

I really appreciate the help on this forum, and I apologise in advance that I cannot offer any advice back, but as I am still suffering my self. I don't have anyone else to turn to so I find this forum a great source of help.

I'm really struggling to keep my life together. This is destroying me and I don't know much I've got left in the tank. I came on here back in late January with a similar post, and I think things are worse now. I was 41 yesterday and it was probably the worst day of my life, the week leading up to it was horrendous.

I thank you all in advance and honestly hope you are all well. Any advice on the CFS/ME would be much appreciated.

[TiggerMe Ambassador]

Hi Joey, it really does get grim sometimes.... the only suggestion I have is testosterone, have you had your levels tested?

Seems like you are on top of all the other supplements.

I know when I hit bottom it was a combination of low thyroid levels but also my sex hormones had totally bombed too and like you I struggled to see the way forward.

Obviously I'm coming from the female angle but even for me testosterone once added to the other missing hormones was a big kick in the pants and mentally the fight in me returned 🤗

[joey82 in reply to TiggerMe]

My testosterone levels were tested back in May '21

Testtorestone: 13.22 (range 8.64 -29)

Free: 0.201 (range 0.198 - 0.619)

I could probably do with having them check again.

Thank you

[TiggerMe Ambassador in reply to joey82]

Certainly room for improvement there and luckily for you your GP should throw that at you without any arguments! This could well be what is holding you back and is such an easy fix 🙏

[joey82 in reply to TiggerMe]

I really don't know anything about testosterone levels. There is a section in Paul Robinsons book which I will read again.

Why is it such an easy fix?

[TiggerMe Ambassador in reply to joey82]

As they will prescribe you a testosterone gel which you apply once a day and voila you are restored to your former glory 🤗

[joey82 in reply to TiggerMe]

Oh, I have an appointment on the 19th so will be sure to discuss with them. I'll get my sex hormone bloods done before then.

[TiggerMe Ambassador in reply to joey82]

Perfect! Have a read up as always good to go armed with knowledge of what you need, with levels like your last ones I'm sure you will have no problem coming away with a script... as if feeling totally worthless isn't enough if you mention non existent libido it's your gold ticket 😉

Trying to balance all hormones is the key along with all the vits, mins, work life balance, stress, exercise but not too much etc 😏🙄

[TiggerMe Ambassador in reply to joey82]

Out of interest I went to have a look... Yes, he has an excellent page about it 🤗

paulrobinsonthyroid.com/tes...

[GlowCoach Administrator]

So it's only been 4 weeks since your last increase. I would give that at least 3-4 months before you judge how much that is helping, its still early days yet.

It looks like you're doing as much as you can diet wise but there's dairy free to try too. Have to say diary can be a great cause of fatigue in me.

Your folate is still a touch on the low side. You could add another 400mcgs methylfolate to what you are already taking.

I would ditch the folic acid and swap that for methylfolate as a certain group of people with MTHFR genetics can't use folic acid and it can block folate receptors.

How's your gut function? Good diet is one thing but if you have an inbalanced gut microbiome it can certainly cause fatigue. I'd recommend a glass of kefir a day which many people swear by. You can make 'water' kefir at home or buy coconut kefir in supermarkets.

Last but not least if you think you may have ME/CFS then Dr Myhill is the font of all knowledge on things that might help.

drmyhill.co.uk/wiki/Main_Page

I'm sorry things aren't picking up for you sooner but please hang in there.

[joey82 in reply to GlowCoach]

OK all noted. I'll swap the folic out.

It's hard ditching diary as I enjoy feta salads, hollumi salads and paneer curry's. I dont eat ice cream or drink cows milk so I'm not living off it like most other people. Diary is important for protein, b12, iodine and calcium so I'm little reluctant to give it up anyway.

Thing is with my diet, I've done so much and it hasn't changed a thing. I'm very doubtful diary will make the difference.

I dont have any symptoms of a gut imbalance or issue. I still need to see my nutritionist for the results of my SIBO and stool analysis. I have not been able to do my SIBO as I've had a cold which is frustrating.

I know from experience that a change in Levothyroxine dosage can upset me for a few weeks after the change. But I've never known it this bad. Up until 2 weeks ago it was the usual hypo symptoms, bad, but at least I knew where I was at. Since having my latest cold I've been exhausted, and it's confusing and worrying. I experienced very similar with covid a year ago, but I tested negative this time.

I've vowed to my self, if I live through this I'm going to support the people of this forum and the thyroid community.

Joe

[GlowCoach Administrator in reply to joey82]

Obviously it will be interesting to see the results of the stool analysis. The gut microbiome is very important for our overall wellbeing.

For dairy there are no so many vegan alternatives including for the cheeses you mention. They will probably never be as good but at least try dairy free for a while. Some people do need to go the whole 9 yards to feel well.

As for the loss of vitamins etc, dairy isn't the only source of any vitamin and with a wll balanced diet (+supplementing key vitamins) you won't notice a lack of vitamins if you cut dairy out. So many dairy free/vegan people not suffering lack of vitamins from no dairy.

Perhaps the virus you have had is just magnifying everything at the moment.

Are you always getting the same brand of Levo at every prescription?

[joey82 in reply to GlowCoach]

Yes I suppose I really have to try diary free now.

My brand of levo is all over the place. Sometimes its 3 different brands to make up my 175. I currently take teva & accord.

I contacted a few pharmacies suggested by thyroid UK and they will supply me the same brand levo. One pharmacy was really helpful and said they would help anyway they can. I asked my endo for my prescription 2 weeks ago and he still hast given it to me. As soon as I have it I'll get Mercury Pharma ordered up. The pharmacist also said teva is a good brand.

The virus/bug I've had has been the catalyst for the last 2 weeks. I'm 95% clear of symptoms now and still feel wasted.

I'll do a medi checks test on Tuesday just to check I've not over cooked it by my dosage increase. I'll do my SIBO test tomorrow hopefully as well.

[GlowCoach Administrator in reply to joey82]

You can get your GP/Endo to write the brand you want on your prescription to ensure you only get the same brand. See example below, it has to be in the first line of the prescription.

If Mercury Pharma suits you then pick that. Its a very Marmite brand in that people either love it or hate it. It can cause gut issues and make people feel awful. Actually could that be part of your issue?

I think you're just having a bit of a dip due to the virus and hopefully things will look better in a few more weeks. The extra Levo will also have more time to work + you have a couple more things to fine tune now.

named brand prescription

[joey82 in reply to GlowCoach]

I've not taken Mercury pharma for ages, as in maybe years. I used to insist on it but my pharmacist insists they cannot get it. And yes I've tried another pharmacy as well.

For £30 I'd rather just take matters into my own hands and organise it myself, it will only be a months trail to rule it out and then try another brand. When I used to change from MP to teva for example I used to get nausea.

I'll keep going. The last week has been the darkest of my life and I've wondered if I'd pull it back. Today has been better thank god. Like you said hopefully it's just this virus thing thats done me over.

Cheers guys.

[GlowCoach Administrator in reply to joey82]

Keep going Joey. It can be really tough and few people will understand that other than someone who's been through it themselves. Don't be too hard on yourself.

[DippyDame]

Good! Keep working on Vit D/ nutrients

You are gluten free...helps a lot of people with raised thyroid antibodies

Your T4 to T3 conversion appears fairly good and should result in adequate serum T3 but hopefully more levo along with more Vit D will raise your FT3 further, to make a difference

Give the dose increase about 8 weeks to settle into the system before testing again and drawing any conclusions about it's effectiveness.

However, it really depends on how much of that T3 reaches the T3 receptors in the nuclei of the cells.... which is where it becomes active

I was diagnosed as having both Fibromyalgia and CFS....raising my T3 helped a lot

My journey is recorded in my bio.

You may find the following helpful

healthrising.org/blog/2019/...

frontiersin.org/articles/10...

Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study

rejuvagencenter.com/thyroid...

I fully understand how you feel, it can be be very tough.

This forum saved me, before arriving I thought I must be the only one in that state and medics were no help. I wondered if I was beyond help and found myself in some dark moods.

Thankfully I eventually found a way forward, so keep going, we are all here to support you. You will only feel like you do for the rest of your life if you listen to that negative attitude from ignorant medics!!

Don't expect an overnight fix, that was one of the important things I was told, it takes time....and the correct medication!

Post your next set of labs they will help point the way forward.

Take care.

[marigold22]

GlowCoach said : "I would ditch the folic acid and swap that for methylfolate as a certain group of people with MTHFR genetics can't use folic acid and it can block folate receptors". I totally agree with that. Taking Methylfolate and Methylcobalamin (B12) was a game changer for my mental health. Along with getting my FT3 at the top of range.