What should I do until endo appointment in September

[StillEverHopeful]

I really hope someone can advise me, if you have the energy to get through my long post...

I’m feeling lost as to how to help myself until the end of September when I have my first endo appointment (perhaps I am being naive in hoping I’ll get help as it is a thyroid specific clinic)

Hubby has holiday this week and it highlights how little I can do, a simple beach trip without all the beach paraphernalia was exhausting, walking up the sand bank I had to stop every few steps due to muscle pain I’m my legs.

Today’s plan was lunch out followed by a visit to the coast for a paddle I only managed the lunch.

My neck is getting thicker, throat uncomfortable, shoulders aching, pain in my muscles, particularly my thighs. Breathing feels shallow, Iron medication has caused such severe constipation I haven’t taken it for 10 days.

Then there’s the heat - I know every one is suffering but my whole being sweats, arms, even backs of hands plus all the usual places.

The way I feel at the moment I think that all hope for feeling well has gone.

I haven’t returned to gp since referral as I think they will push CFS again. I am aware of a link between low T3 and heart disease so am stressing about this too as my father had heart issues at 57 & I am now 55... and scared I won’t make 60 (I don’t appear to have any heart problems & not been offered statins)

I know that my FT4 and FT3 have room for improvement, but gp won’t go against the computer...

I really don’t know how to help myself until the appointment and don’t want to get on the wrong side of the Endo but at the same time feel hopeless after reading the lack of help Endo’s have provided others.

To recap some of my previously posted results

Aug 2016 - diagnosis

TSH 4.06 (0.3 - 3.5)

T4. 10 (range? 8-21)

TSH was only test until April 2018

APRIL 2018 - medichecks

TSH 0.62 (0.27-4.20)

FT4 14.7 (12-22)

FT3 4.7 (3.10-6.8)

Thyroglobulin antibody <10 (0-115)

Thyroid peroxide antibodies 16 (0-34)

MAY 2018 - NHS

TSH 0.52 (0.35-3.5)

FT4 12 (8-21)

FT3 3.4 (3.8- 6)

JUNE 2018 -NHS

TSH 0.17 (0.35-3.5)

FT4 13 (8-21)

FT3 4.1 (3.8 -8?) verbal so not confident of range

Thank you for getting to the end of my post.

[Jazzw]

You poor thing. How much levothyroxine are you currently taking?

[StillEverHopeful in reply to Jazzw]

100mcg gp won’t increase even though shown prof Tofts Pulse article and Thyroid U.K. symptom tick list wet “just vague symptoms” so got endo referral from him as I refused CFS label

[Jazzw in reply to StillEverHopeful]

Have you been on that dose for a while or just a few weeks?

[StillEverHopeful in reply to Jazzw]

I’ve been on that dose since mid May 2018. The last test was end of June to see how it was working. By then my neck was extremely tender. The GP says he couldn’t feel anything. It’s not quite so tender but still feels like something stuck in my throat and being chocked if I try to wear a light necklace.

January I was on 75mg and had started to feel less well have had to plead for last two increases (25mg every other day) - although levo has helped I have never got to feel well.

[Jazzw in reply to StillEverHopeful]

Big hug. So you have a GP who thinks TSH is king but very low T3. Which goes hand in hand with iron deficiency anaemia - you need your iron levels to be good to be able to convert T4 to T3.

And I see from past posts that you are very anaemic. Maybe that’s something to work on...? How much iron are you taking each day?

[StillEverHopeful in reply to Jazzw]

Since beginning of July was prescribed 2x Ferrous Fumarate 210mg but the constipation was so painful and left me feeling toxic ...I also take 1g vit c with the iron. So haven’t taken for the last 10 days but will start again with just one daily and see how it goes before increasing.

Getting ferritin raised is a problem for me (& my mother) as my Haemoglobin is always well in range GP is disinterested even though my MCV is consistently below range.

I was using a liquid iron ‘Styron’ but really didn’t like the fake sweeteners and wasn’t making a great impact.

I also supplement with BetterYou vit D , k2 and magnesium spray plus Jarrows B right complex

[Jazzw in reply to StillEverHopeful]

Yes, I’ve just been reading your older posts while I was waiting for you to reply. Seems that for some reason you really have to stay on top of your iron supplements or your levels drop like a stone, eh? Which makes me wonder about absorption issues...

Have you ever tried going gluten free? It’s not something I ever wanted to contemplate (I loved bread sooo much!) but I’ve been so much better since I stopped having it.

Have you tried having liver? Pate would work too (I can’t do straight liver but can do pate, no problem... ). It’s good that you take vitamin C with your iron tablets. Think I’ve seen a study somewhere which seems to suggest that taking vitamin C (even by itself) can raise iron levels?

But if you haven’t tried gluten free I’d definitely recommend trying it.

[StillEverHopeful in reply to Jazzw]

You’ve said what I’ve been reluctantly thinking recently - try gluten free.. and yes I love bread too! And we have a wonderful waffle restaurant near by. Had a couple of mega gluten days last week with birthday celebrations- waffle Restaurant brunch and later dinner of lobster with lots of bread, was exhausted next day but thought I’d overdone the celebrations, but there is the nagging thought of gluten... how long was it before you felt the benefit of GF?

Due to “celiac” friends of my son I am reasonably clued up. Guess I’ll be browsing the GF aisles at the supermarket!!

Going GF will be worth trying until I see the endo and I will feel proactive too.

Yup the iron does drop like a stone! If I don’t keep at it.

I have been doing liver too, but I have been eating it with lovely bread!!

I have found just one recipe I like with small pieces of chicken liver garlic, ginger, lemon and paprika sautéed in butter, but also make it into a pate so family don’t groan at liver more than once a month.

Have you heard of a “lucky iron fish” you boil in water & a drop of vinegar to create iron water? It has transformed anaemia in Cambodia and I was wondering about getting one to help supplement my iron and perhaps less constipation.

[Jazzw in reply to StillEverHopeful]

With going GF, hmm. It took a while but probably because I was in denial for a while and tried to kid myself I could have it every now and again. Once I got it into my head that it had to be absolute abstinence, I improved quite quickly really. A few months maybe. My stomach issues cleared up the fastest but after a while I realised my energy levels had gone up quite a bit too.

There are some reasonable bread substitutes these days (there’s a definite upside to GF being “trendy” at the moment, the downside being that it sometimes isn’t taken seriously enough in restaurants) so you might still be able to find something to load your pate on to.

I’ve never tried an iron fish, but heard some very good things about them. Worth a go!

[StillEverHopeful in reply to Jazzw]

Well I’m guess the GF starts after my supermarket shop this week -I’ll take my magnifying glass!! 😂

Think going without fish and chips will be tough.

Think GF bread has improved recently, so that’s encouraging for the pate.

many haven’t realised how ill eating gluten can make some. Know of a child on a plane requested GF diabetic meal in advance ending up being sick the whole flight as attendants hadn’t received said meal so decided to give the diabetic meal without consultation.

We just need others to realise going GF isn’t a fad.

I’ll post how going GF works for me.

[Hennerton in reply to StillEverHopeful]

I know I should not say this but can you afford to go privately to someone from the Thyroid UK list? I just have a feeling you are going to be disappointed in September, after a long wait. I have found that whilst privately seen endos are no more pleasant than when seen on the NHS, they at least feel under some kind of obligation to do as I ask and listen to me without looking too bored. This is how I managed to get my first T3 prescription several years ago and then move to my GP thereafter for repeat prescriptions. Just a thought...

[StillEverHopeful in reply to Hennerton]

That may have to be an option but would like to give the nhs a try first...will take hubby with me. But if that fails not sure if to self medicate or try private endo ( I have TUK list). CCG here only let Endo’s prescribe T3..

Have just heard of endo at my local hospital of diabetic Endo’s (that I rejected seeing due to bad reputation for thyroid care) have offed someone t3 and iron infusion... the hospital I choose has a dedicated thyroid clinic....

[Hennerton in reply to StillEverHopeful]

Sorry to labour the point but why wait almost two months when you can see someone quickly? You can always move to the NHS list of this Endo later if you like him. Just get your foot in the door...

[Hennerton in reply to StillEverHopeful]

P.S. Do not worry that you are depriving an NHS patient of an appointment. All private consultants have a day a week set aside for their private practice. It is how the system works. They do not see NHS patients on this day.

[StillEverHopeful in reply to Hennerton]

The hardest part of going private is choosing who to see... have TUK list of Endo’s and when I posted asking about a couple I didn’t get any responses.

[Hennerton in reply to StillEverHopeful]

No, the hardest part is actually paying for it! Sorry, could not resist that but do try again asking for names. What about the one you are meant to be seeing on the NHS? Have you had any feedback about him? My experience, sadly, is that all endos are more helpful when being paid for it.

[StillEverHopeful in reply to Hennerton]

Of course I forgot about payment! That’s another reason I’m hanging on for the NHS.

My appointment is at Addenbrookes.

I had seen folk mention Prof Chatterjee favourably who heads up the team...

[Gcart in reply to StillEverHopeful]

Didnt want to and so miss toast with breakfast, but would never go back to gluton or wheat ( not sure ). No test , but stomach probs gone , constipation gone and not anaemic after a life time of being so . Good luck

[humanbean]

there is the nagging thought of gluten... how long was it before you felt the benefit of GF?

I know you weren't asking me the above question, but I just wanted to mention that I started getting benefits from day five of being gluten free. In my case my temper improved immensely.

I had/have problems with iron absorption. I was still struggling to get my ferritin level to mid-range after about 18 months of supplementing ferrous fumarate 210mg three times per day. Then I went gluten-free and my ferritin finally went up much faster than it had ever done before and it went to slightly over mid-range three months later.

I still have problems with iron, but being g-f allows me to hang on to iron a little bit better than I did before.

Generally, I get fewer swings from constipation to diarrhoea and back to constipation again being gluten-free, and my gut feels less inflamed and bloated. (I don't have coeliac disease - I was thoroughly tested, including endoscopy and biopsies, and all the tests were negative.)

I also feel less brain-fogged being gluten-free.

Although I was angry about having to be g-f (I missed cakes and sponge puddings and biscuits and toast) and resented it enormously, nothing would induce me to start eating gluten again.

Please note that you can take 1 gram of vitamin C with each dose of iron, if you want. I'm not aware of it doing harm and it does help with iron absorption, as well as making it less likely you will get constipated.

[StillEverHopeful in reply to humanbean]

I’m really glad to hear it’s possible to notice benefits in just a week and am glad you posted.

I’ve already learned how to make a decent gf sponge cake (I used to bake once a week for elderly coffee morning and they needed GF) think for me it will be fish and chips I’ll miss.

I am taking 1g of vit c with each iron dose.

[humanbean in reply to StillEverHopeful]

One thing I use to help with constipation is Aloe Vera Juice - the Cranberry flavour is the easiest to drink in my opinion. I buy the cheapest brand I can find. It usually comes with a little measuring cup and I take one (undiluted) dose a day if things are working okay, and two doses a day if I'm bunged up. It might be worth a trial. You'd probably have to take it for 2 or 3 days before it starts to shift anything if you are very bunged up. That's if it works for you at all - we're all different.

[StillEverHopeful in reply to humanbean]

I’ll give it a go! Nothing ventured nothing gained.

I was soooo bunged up and in pain I resorted to glycerin suppositories to ease the passing, (last time I used them was 22years ago after birth of my son) and it seems to have taken a week of no iron to shift the backlog. I’m now making sure I drink loads of water too.

[humanbean in reply to StillEverHopeful]

I hate using suppositories. I prefer using micro-enemas when I'm desperate - they don't involve me sticking my fingers where nature never them intended to go!

expresschemist.co.uk/pics/p...

I've also used these :

expresschemist.co.uk/pics/p...

But I prefer the ones in the first link.

I also do reasonably well with this oral laxative :

simpleonlinepharmacy.co.uk/...

All the things I've linked have to come from pharmacies and you have to ask for them, but you don't need a prescription. I'm assuming you might be able to buy them online too, but I've never tried that.

[Highland49]

Hi StillEverHopeful,

I'm a stage on from you in that I've seen a helpful private endo, so I thought I'd pass on some info to give you hope. I was prescribed 75mcg of levo back in May this year. It helped by taking the brakes off in that I could then walk better. I think going gluten free has helped my breathing. I don't have shallow breathing as such, more a feeling of suffocation and needing regularly to take a deep breath. On bad days, this doesn't help so I just have to go with it until my breathing settles later in the day.

At my first consultation, endo was happy to prescribe levo even though according to NHS guidelines, my results didn't justify it. I have high TPO antibodies though and family history.

At my second appointment, he continued me on the same dose as results were fairly good. As my t3 is lower than it should be, he wants me to test my reverse t3 before my next visit. Something like 20% don't convert the t4 to t3 well, so need to be on the more active t3. He prescribed anti viral medication as I tested positive for 4 viruses.

My ferritin was very low but eating liver once a week has really brought my levels up. I have it for lunch once a week as my family would refuse it for dinner! I also had problems with balance, caused by low b12 so have to self inject every other day. Do you know your b12 level before you started the b complex? Sadly now, any further blood tests will show a falsely elevated value. You're legally entitled to a print out of your results from your surgery.

So possible plan of action could be to obtain a full thyroid panel as this would include the reverse t3 plus selenium, which is needed for thyroid health. I used blue horizon but I see that you're already familiar with medichecks.

It's difficult to know whether the endo you're seeing will take any notice of any research that could bring with you but the late Dr John C Lowe wrote some wonderful papers, particularly about prescribing t3.

Good luck with everything.

[StillEverHopeful in reply to Highland49]

Thanks Highland49!

I’m curious about your viruses... about 5years prior to hypo diagnosis I had several months with post viral fatigue after a summer cough.

I did medichecks Thyroid ultra 11 or whatever it is called in April. Sadly I was already supplementing b12 prior to test.

Am going to give gluten free a try.

[Highland49 in reply to StillEverHopeful]

Hi StillEverHopeful,

I tested positive for 3 older viruses - cytomegalovirus, Epstein Barr and human herpes virus-6.

The more recent one was the parvovirus. So the endo diagnosed post viral fatigue as well as Hashimoto's. My symptoms, particularly the breathing, became much worse after the parvovirus.

Good luck with going gluten free.

[StillEverHopeful in reply to Highland49]

It’s really interesting the virus aspect was explored by your endo.

Just hope the one I see will explore all avenues.

Have now stocked up on some gluten free bits and will see how that pans out as a staring point and will look at Dr Lowe’s papers.

Thanks for your encouragement too.

[Highland49 in reply to StillEverHopeful]

I had some gf birds eye fish the other night, not too bad 😀

[rosserk]

StillEverHopeful, my journey was similar to yours and your description of a day at the beach is one I can identify with.

My Doctor initially gave me 25 mcg of Levo which brought my TSH back into what is known as the normal range. My TSH at that time was 3.7 but he flat refused to increase my dose insisting there had to be another reason for my symptoms. I was left with no other choice than to increase my Levo without my Doctors permission. I continued increasing my Levo at 6 week intervals until I felt well. I am now on 150 mcg of Levo and almost back to feeling normal, I feel better now than I’ve felt in the last three years.

My TSH is now 0.01 my T4 is 23 and my T3 is 5.8. My Doctor only tests TSH so I’ve had private tests to monitor my levels. My Doctor now knows I’m on 150 mcg and that I’ve no intention of dropping my dose and if they force me I will source my own Levo. If I were in your shoes I would increase my Levo by 25mcg and see how I felt and then explain to the Endo why I did it using Professor Tofts article to support my reasoning. All the symptoms you describe are of someone under medicated so why wouldn’t you try a dose increase and see if your symptoms improve? Why should you wait 6-8 weeks for an Endo who may or may not increase your dose when you’re barely functioning and have no quality of life?

I’m lucky that I feel the effects of a dose increase almost immediately so I knew instantly I was on the right track. I was diagnosed in January and I waited months before taking matters into my own hands, I wish now I hadn’t waited because I won’t get those months back and life is definitely to short to wait.

As for missing fish and chips the following is an excellent recipe.

bbc.com/food/recipes/gluten...

Good luck 💐

[StillEverHopeful in reply to rosserk]

That recipe looks good! I will give it

I’ll pm about the levo as I will need to source the extra myself. GP I last saw is dependant on the computer saying yes and at TSH of 0.17 the computer says no! He wasn’t interested in Prof Tofts article either. The only good thing is I got a referral from him.

Last year (march2017) I was only up for 3 hours a day doing nothing and I have improved so much from then. If I lay around like the cats, being fed on demand, I think I’m ok, but my husbands l holiday leave has highlighted that I can’t do “normal” yet.