A bit exasperated...advice please?

[katacharin]

Hi all, I wonder if I could maybe just vent a little and also maybe get some advice for which direction to go next.

I feel like I have been round the houses, as I'm sure many of you have also felt. Having paid to see a private thyroid doctor, who then referred me to an endocrinologist - who both said thyroid levels look 'normal', the endo suggested I may have PCOS due to some of my symptoms, but all my bloods for that also came back 'normal', so I have just been told in a letter that cost me £60 that I am fine.

I have gone strictly gluten free since the start November but with no noticable improvements yet.

And I have recently seen a nutritional therapist. Now she at least agreed that I'm not fine; she recommended a long list of expensive supplements (in addition to the large handful I've already started taking), gave me a £50 herbal concoction which has made me violently sick, and has recommended an adrenal saliva test and a stool test (both coming in together at around £350).

I guess I'm just feeling a bit exasperated and not sure what to do next. To be honest my gut instinct doesn't feel right about spending all my (and my mother-in-law's) money on all these things. It's actually making me feel increasingly stressed, which I know can't be good. Some days I just want to shout; I have done so much to adjust my diet, it has never been so healthy, I'm spending more money on buying organic veg & natural cleaning & beauty products - and yet none of it has made any difference. I'm just at the point where I'm really feeling anxious about spending more money (my partner and I are by no means wealthy) while all my symptoms go on unabated.

I was hopeful that the Nutritional Therapist could help, and she said she believed I would be able to lower my antibodies - and therefore my Levo meds - which would be great. But she doesn't seem to be addressing that, she is really slow at getting back to me, and always seems to give me the minimum amount of information possible. Obviously she isn't cheap - and neither is anything she has recommended, I don't want to continue down that route, spending more money, unless I really know it will be worth it.

I really do want to get better, and I believe that natural ways will help me, but I'm just at one of those brick wall moments if you know what I mean?! I'm taking a vertitable cocktail of vitamins & supplements each day now, but still I feel no better at all.

I feel like I will go back to my GP soon, as I have had chronic constipation for so long now, with one laxative after another (the NT has told me to take some natural supplements called Coloclear for this, which cost £10 a bottle, and at 8 tablets a day will only last about 10 days - I feel like this is just another version of a laxative and that if I stop taking them I'll just block up again - at least the stuff from the GP was free).

I also know that by February, when my husband & I will have been trying to conceive for 18 months my GP will at last be able to refer me to a fertility specialist, which I can only hope will reveal more info.

In the meantime my hair continues to fall out (even after cutting most of it off because I was getting so frustrated). My periods are still not normal, with early spotting and extremely light flow, although according to all tests my hormones are within range.

Sorry, I know this is a bit of a rant, and I try daily not to get into a pit and feel sorry for myself, but I just wondered if anyone had any advice of what I should do next?

(FYI these were my latest blood results

DHEAS level 6.1 umol/L

Serum FSH level 4 iu/L

Serum LH level 4 iu/L

Serum Prolactin level 419 mu/L

Serum testosterone 1.2 nmol/L

Blood glucose level 4.6 mmol/L

Serum Vitamin D 76 nmol/L

I also got the set of bloods from the last time I had them done:

Thyroid Peroxidase AB 185 kiu/L

Serum TSH level 2.29 mu/L

Bone profile

Serum calcium 2.39 mmol/L

corrected serum calcium 2.21 mmol/L

Serum albumin 49 g/L

Total alkaline phosphatase 55 u/L

[shaws]

I assume you haven't been diagnosed but have clinical symptoms of hypothyroidism. Your TSH maybe in the 'normal' range but they should take account of your clinical symptoms but most doctors only go by the blood test these days.

Others will comment on your other results.

You obviously still have clinical symptoms of hypothyroidism. PCOS, female problems, difficulty in conceiving all point to insufficient hormones.

When you post your results, it's helpful if the ranges are also quoted. The reason being, that labs throughout the country use different ranges.

We have to read and learn ourselves. Many of us have found that because we are not feeling any better on levothyroxine that we have to try other avenues. Many do fine on levo if they are given sufficient to convert to T3 which is the active hormone needed for us to function normally. Most doctors/labs wont do T3 if the TSH is in the 'normal' level. Many get their own T3 blood test and Thyroiduk.org have a list of labs. Our receptor cells have to be saturated with T3 and we have billions of them. Obviously I don't mean to overdose with T3 but have sufficient supply.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/testin...

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

If you email [e-mail] she has a list of sympathetic doctors.

If you read the first response to this question on this link, it may be helpful. Clutter is good at responding re pregnancy.

healthunlocked.com/thyroidu....

[katacharin in reply to shaws]

Thanks, I have been diagnosed hypothyroid (in Sept 2013) and am on 125mg Levo daily. I had my FT3 & FT4 tested earlier this year, as follows:

Free T3 4.3 pmol/L (2.80-7.10pmol/L)

Free T4 19.8pmol/L (9.00-26.00pmol/L)

TSH 1.91 mu/L (0.35-6.00 mu /L)

So my TSH has gone up since those results, as you can see.

My GP didn't want to give me T3 meds, although I did ask them about it - and the private specialist.

Thanks for your reply.

[shaws in reply to katacharin]

If you email [e-mail] and ask for a copy of the Pulse online article by Dr Toft. Question 6 will tell your GP how low your TSH can go and also mentions adding T3.

[shaws in reply to katacharin]

This is a very informative link but your T3 is in the middle of the range:

hormonerestoration.com/Thyr...

[Marz]

How are your B12 levels ? Also the Ferritin - Folate - VitD.... They all need to be high in ranges - Ferritin around 80/90. Being optimal enables better conversion of T4 into T3.

I posted earlier today about T3 - take a look as there is a formula about calculating your level of T3 and whether or not it is optimal....

[greygoose]

If I were you, I woldn't waste any more money on the Nutritional Therapist! In my experience they rarely know what they're talking about - especially if you're hypo! Plus, they want you to buy all these expensive suppliments, as you've found out! Plus, the idea that lowering your antibodies will mean you take less levo is a little suspect. You are not taking the levo for your antibodies (unless you are taking a high dose to suppress your TSH, which doesn't seem to be your case!). You are taking the levo to replace the hormone your body can no-longer make for itself due to damage done to your gland by the antibodies. Reducing the antibodies will not repair the damage, just ensure that there is no more damage.

So, you didn't say what she recommended in the way of diet. Odds are, she recommended low fat (just guessing here) which is not going to help your constipation! Also, the constipation could be due to low magnesium. Are you supplementing that?

But it's also due to the fact that your T3 is just too low! It's not even mid-range. Whereas your FT4 is over mid-range. Which suggests that you aren't converting too well. An addition of T3 to your levo would do you a lot of good.

It would be interesting to know more about your diet and the suppléments you're taking.

Hugs, Grey

[katacharin in reply to greygoose]

Hi Grey, thanks for your reply.

I am supplementing with Magnesium, yes (400mg every night). I now also take....Vit D3, Biotin (for hair loss), Vitamin C in powdered form, Folic acid, Zinc, B12 and Dong Quai.

In terms of diet she didn't really recommend anything very different from what I am already doing to be honest. She said to stick with gluten free. She recommended I add some phytoestrogenic foods (lentils, chickpeas, soy - although I'm still avoiding soy tbh, don't trust it especially) to try and sort out my period abnormalities - but she also said to bulk up on fibre in case I have too much estrogen and need to 'sweep it out'. It seems a bit like contradictory advice & guess work. She suggests 2tbsp flaxseed a day (I normally get about 1tbsp into my morning smoothie). "Eat more cruciferous vegetables... eat food to support your liver" (with a list of foods) and 'drink lots of fluids' - which I do anyway.

I'm already following a mostly veg diet, with some non-gluten grains, I'm a pescatarian so occasionally have some nice fish. As I said, I have been avoiding gluten already. I normally have a green smoothie for breakfast, some soup or salad for lunch, and a vegetable based meal in the evening. I snack on nuts, seeds and sometimes fruit, or on homemade nut bars I make.

It's very interesting what you say about her advice re. Levo. She said ideally she'd like to see someone of my size (i.e. not very big) on around 50mg per day. But she hasn't written anything about how she plans to address this in my notes.

All the supplements she recommended came from suppliers where I was meant to quote her name (not sure if that means she's on commission?!) I put some work in and managed to find all of them cheaper from other sources!

Just not really too sure what to do going forward now. I have the stuff for the Cortisol & stool tests, which as I said are pretty pricey - but part of me thinks it would be good to see what is going on with those things.

I don't know, I think I got to the point where I had absorped so much information from the internet about how to treat hypothyroidism & hashimotos, and read plenty about how it's possible to put it into remission and lower/stop meds. I felt I wanted to see a nutritional therapist, with a functional medicine background (which she has) to try and make sense of it all. But I feel more confused than ever really!

Honestly, I just want to eat well and enjoy life and stop thinking about this all the time!

xxx

[greygoose in reply to katacharin]

I'm not surprised you're confused!

I really can't see, from what you've said, where she's going with this treatment. For a start, to tell someone with a thyrod problem to eat more cruciferous vegetables is a little strange. First of all, I would think you should make sure you can tolerate them, because they are goitrogenic and can have an adverse effect.

Your size has very little to do with your dose of levo. It dépends on how much damage has been done to your thyroid gland. Honestly, I don't think she knows anything about thyroid!

And I expect she is on a commision!!!

OK, so where to go from here... First, your diet. I'm glad you're avoiding the soy, because that really is a no-no for hypos - actually, nobody should touch it with a barge-pole, but still...

I'm afraid that your veggie diet is working against you. I know that's not what you want to hear but it's true. We are carnivors and need animal protein and fats. It's good that you eat fish but is that enough?

Be careful of the vegetables, fruits and even some nuts (walnuts and almonds) as lots of them are goitrogenic and may be working against you. Take careful note how you feel after eating any of them.

What about dairy and eggs? Eggs are full of good things and very good for hypos.

You are taking some of the B vits, but ideally, you should take them all, as they all work together. Add in a B complex. How's your iron? I can't remember if you mentioned that.

Anyway, once you've stopped paying for the nutritionist' and her expensive suppléments, you should be able to do the cortisol test. If I were you, I'd go with that one first, and see where it gets you.

As to reversing your hypo and getting rid of antibodies, I think it's safe to say that gluten-free doesn't work for everybody. it didn't for me. And even if you did get rid of the antibodies, it would depend on the damage to your gland how much hormone you need to take. However, have you considered LDN?

But the bottom line is, your T3 is just too low for you to feel well and get rid of your symptoms. The best thing you could possibly do is take some T3 or change to NDT.

[katacharin in reply to greygoose]

Thank you. That's a lot of food for thought.

I really don't want to eat meat, for ethical reasons, I don't think I could bring myself to again really. I do still eat eggs though.

I haven't heard of LDN, can I order that myself or does it have to be prescibed?

I will talk to my GP about my T3 levels again, but they seem to be happy with them even if I am not. And I very much doubt they will prescribe me T3 or NDT - I have asked about this and been shrugged off. (Side note - I will probably be moving in the new year and so will have a new GP soon, so I guess I can at least start afresh?)

Thanks for all your advice.

[greygoose in reply to katacharin]

LDN is not something you can really treat yourself with. That's why I haven't started it yet. You need a doctor to prescribe and control. A doctor that knows what he's doing - or is willing to learn. Don't know where you'd find one of those, but a naturopath might be your best bet.

I've been on an LDN Facebook group for over a year now, in the hope that you can do it yourself, but what I've been reading doesn't give me much hope of that. I don't even know where I could buy it!

I doubt if your doctor's even heard of it, either! None of mine ever have. It was only a chiropractor that knew of it, but even he didn't know what to do with it! And even if he has heard of it, he probably associates it with rehabilitating drug addicts. But that's Naltraxon at a much higher dose. Low Dose Naltraxon is used for autoimmune diseases.

I do understand how you feel about meat. I went veggie about 15 years ago for the same reasons. Well, I told myself it was for that, but I think the true reason was that I was becoming more and more hypo and just didn't fancy meat, and I rationalised it! Happens to lots of hypos. Perhaps something to do with not being able to digest it easily.

Anyway, it was the worst thing I could possibly have done for my health. I went rapidly down-hill after that. I stayed veggie for about five years until my family, being concerned for my health, persuaded me to try eating it again. I won't say that it was easy, or that it was an instant recovery, but I think it helped in my struggle (on-going) to get back to being something like a human being! I still don't eat much meat, but from time to time - especially as I don't really like fish. I look at them and think, no, I just don't want to eat that. lol Easier if I don't see them whole!

As I said, we are omnivors. Nature intended for us to eat meat. Our health dépends on it. But it's a personal choice, and you must do what you think best. Just be aware that it isn't helping you.