Here we go again! Next stop - private?

It's been a very disappointing & stressful day. I saw an NHS Endo in July this year, he was nice enough but I didn't get the vibe that he was going to be a lot of help from the beginning. But I managed to get some more blood tests ordered from him with a follow up appointment scheduled for today.

Well I got the first bloods done early August & the results came in & somehow despite him requesting the full thyroid panel on the blood test form plus ferritin, they didn't do those tests!

So I rang my surgery & the hospital & he sent another docket & I had my bloods done again a week ago with the assurance that they would be ready for today. They weren't - he actually had to ring up the lab to get the test results while I was in the appointment & yes he did apologise for that.

My blood pressure had literally rocketed to 174/90 odd with all the stress of chasing the surgery and the hospital for the results - I like to have my results beforehand so that I can discuss them with the Endo so here we go: I don't have the ranges for these ones as they were the ones given to him on the phone.

TSH: 3.2 no real change there.

T4: 16 an increase of a point as it was 15 beforehand.

T3: surprise, surprise the lab did not do the T3 test!

Ferritin: 53 - up from 26 - he said that was still on the low side however it was a good decision of mine to change what I was taking before which was Liquid Feroglobin - I didn't think it was helping me much. I've been taking Floridix Liquid Iron for the last few weeks & yes I have noticed a difference in my energy levels. I laid off taking the supplement for 48 hrs before the test so I am happy with the increase & will continue taking it.

My sex hormones were also measured as I am having very irregular cycles which started last year.

No ranges to these results.

LH: 28 iu/L

FSH: 51 iu/l

I accept that some of my hypo symptoms may very well be down to being peri menopausal/menopausal but he still couldn't really tell me where I was with this!

Hb A1c level 5.3% (4.0 - 6.1) as I deduced & the Endo agreed, I'm not diabetic. Didn't think I was (I have put on a horrible amount of weight since last year 2.5 stone now)

I did the dexamethasone cortisol test as the Endo wanted to test for Cushings.

My result was <25 nmol (Range is 138-620) obviously I don't have Cushings but having very low cortisol in the morning makes sense to me as I cannot get going till late morning. I still have the saliva cortisol test to do.

Then the Endo tested me for coeliac disease. I eat a mainly gluten free diet anyway (with the odd slip at times)

my result was 1U/ml - the range is <4

So I take it that I am not coeliac.

And that was that - without the missing T3 blood test in the jigsaw puzzle, he couldn't think of anymore endocrine tests to test me for - for my vast amount of hypo symptoms so I am hereby dismissed!

There wasn't any more point for me to stay & argue my symptoms because I was hitting the brick wall!

I have no choice now but to get all my thyroid panel tested privately because at least I will know what the heck is going on with my T3!

I am taking separate supplements for Vit B12, Vitamin D3, Vitamin K2, Vitamin A, Vitamin C, the other B's, Liquid Iron, magnesium & calcium.

If anyone has any other suggestions about my results or if I need anything else testing, I'd be happy to hear them out.

41 Replies

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  • That's a shame when you think your getting somewhere it dosent work the way you needed it to . I have hashi an going private because I am sick to death if the nhs protocol. Be careful with vit a I stopped it last week because I've read you can over do it . I feel the same as yourself I need a specialist to look at t3 . Hope you get one soon an back to better health

  • I am taking Vit A to help my eyes - they seem to have taken a bit of a bashing with the hypo symptoms. I can have dry, sore eyes and then have watery eyes - all on the same day with blurred vision to boot! I have changed all eye make up to hypoallergic stuff just in case - but I have suffered with blepharitis in the past and have to be careful.

  • Ah that's weird because I was at opticians on Sunday was told ive extremely dry eyes an prob related to hashi he was an optician but going on to be doctor so was very interested he advised to get drops mon preservative an my doc had perscribed also a lot of others give me the same advice on this site ๐Ÿ˜

  • If you have Hashimotos, dry eyes could be down to Sjogrens Auto Immune Disease. Hashimotos & Sjogrens can go hand in hand. I was diagnosed with it this year.

    Flower

  • I suggest you save your money from seeing a private endo and simply get t3 and self medicate or get NDT and self medicate

    The refusal of NHS labs to test T3 even when requested by an endo is a total disgrace

  • I am going to order private thyroid blood tests from Genova/Blue Horizon first reallyfedup123 - I just need to know what the T3 blood test result is before I take the next step.

    NHS labs playing god is a total disgrace and I am going to raise a complaint about this!

  • To be honest I would be afraid to do it myself I have thought about it tho ๐Ÿ˜

  • I do not know why your frightened to go it alone plenty on here have done it as have my daughter and 3 grandaughters

    Doctors are pretty useless as you have found out

    All you need to do is sensibly follow the advice on here and other thyroid sites

  • I was frightened too.

    I was eventually prescribed T3 on National Health & now they suddenly stopped it. !!

    I am now forced to self medicate having started it.

    It has made me feel better.

    Flower

  • Hopefully when I get blood results this week il have a better pic don't know if I'm high or low but my toungue is very sore but I've had tha for years an my doc just ignores when I mention it . I slept like a log last night thank god . But up early all go then I completely crAshed slept from 130 to 3. Thanks flower il post new results hopefully make a decision

  • Going private is unlikely to help with diagnosis, I'm afraid. Most endos seem to have attended the same thyroid lecture at uni - the one which says no other test than TSH is required to diagnose thyroid problems, that you're not hypothyroid if your TSH is 9.99 but that you are if your TSH is 10 and that thyroid antibodies don't matter...

    Your seems especially not clued up - did he not tell you to eat gluten foods everyday for at least 6 weeks before the test for coeliac? It wasn't worth doing if you didn't...

  • Hi Jazzw - he certainly didn't tell me to eat foods with gluten in them for at least 6 weeks before the coeliac test!

    I only read about that literally last week and thought great!!! That's another useless test.

    And that's another test I will have to pay to do myself - all I know is that wheat or no wheat, I can bloat up after meals!

  • You may conclude it's not worth bothering with. I get very sick if I eat wheat, so the idea of having something with gluten in everyday for 6 weeks does not appeal! Pretty sure my employer would freak if I went sick for that length of time too. I know for sure there's a problem but a formal diagnosis can wait for now!

    Anyway, yes - go with some private blood tests and then make a decision about possibly going it alone with self medication. There are plenty of folk here to advise if you do make that tricky decision.

    Oh, and consider whether you might need to go dairy free instead...

  • I don't get sick or feel sick with anything with gluten in it.Poor you, that's really rough. I had thyroid antibodies tests done which were negative so I don't have hashi's - well I don't think I do anyway!

    The gluten free eating or as much as possible gluten free is for health reasons as my husband also thinks he has some wheat intolerance (his sister does but isn't coeliac) and he also bloats up but he's skinny.

    From all the research I have done on here and on other thyroid forums, I've basically concluded that I have a T4 to T3 conversion issue but without knowing what my T3 result is then I am really stabbing in the dark.

  • If you bloat after meals i suggest you go totally gluten free (not just wheat ) and see if that helps first before paying for coeliac test

    Its more likely to be connected to cookware than food if its after all meals

    Or its a common food like dairy that your eating at all meals

    A simple typical food diary posted on here will let us zone in on likely culprit

  • I do eat organic yoghurts, I do eat cheese, not every day & I have switched to coconut milk.

    However, I was eating yoghurts before I got ill for breakfast every day and lost 1.5 stone for my wedding in a few months/didn't bloat either - that was eating a mainly carb free (and therefore wheat/gluten free) low GI plan. I still eat like this and better and the result is a 2.5 stone weight GAIN!

  • The weight gain could simply be the hypothyroid

    Organic yoghurt would provide vital probiotics

    If you bloat after every meal it must be a common factor

    Get serious and make a food diary

  • All this gluten an diary free bores the life out of me I do it for a few days then frig that life is s..t enough . Thanks for advice on going alone you've Realy got a lot of experience with all your family that's awful for yous all having this horrible decease ๐Ÿ˜Ÿ

  • I have to agree with you there Donnanomore - all I seem to do is keep on eliminating stuff and feeling no better and not losing any weight either!

    To be honest, I felt better and was far slimmer drinking like a fish & eating crap!!!

  • Yea me to I smoked 20 plus had few bevies plenty of fun an now I'm just this miserable person with a miserable existence no fags no booze no life lol ๐Ÿ”ซ. But lots out there worse than me ๐Ÿ˜

  • I was the same but by the sheer help from above I have been wheat and gluten free 4 months really a bloody miracle but I buy free from bread and oat crackers Marks and spencer have a good free from range for treats :)

  • Yea I've had them delicious thanks I just can't b bothered to go gluten free but I di eat healthy as poss veg spuds good meat etc take lots of supps also . Back on the fags from yesterday flu feeling starting to lift ? I didn't want to but the article on anatibine got me thinking ๐Ÿ˜

  • I dont understand the problem people have eating gluten free

    I am not coeliac but i still happily eat very enjoyably gluten free

    It needs a total change of attitude to food "eat to live" not live to eat

  • I do - I bloody hate it. Miss real bread and pasta soooo much. But the alternative is worse.

  • I totally agree, Jazzw. Gluten-free is such a hassle and eliminates so much from my diet that I really like. But I do get benefits from eating gf, so I'm stuck with it. :(

  • I have no problem eating gluten free - sure you have to look harder for products but you can do it and the supermarkets are responding to more GF goodies. I eat GF bread & pasta and only the other week had GF crisp bake thing from Tesco which was really good!

  • Kk12, The lab declined to test FT3 because your TSH isn't suppressed <0.03. I wouldn't bother to test FT3 right now. While TSH is 3.2 your FT3 is likely to be low in range.

    FSH >40 indicates you are menopausal. The further you are into menopause the higher it goes.

  • But if T3 is low Clutter - wouldn't that show that I'm not converting from T4 and therefore that's my whole problem!

    That's why I want to get the test done :)

  • Kk12, When TSH is 3.2, FT4 and FT3 will usually be low-normal. If the patient is taking Levothyroxine it indicates undermedication, not lack of conversion.

    Low TSH, high FT4 and low FT3 indicate poor conversion.

    NHS labs look for hyperthyroidism, hence TSH <0.03, not low FT3 due to undermedication or poor conversion.

  • Thanks Clutter - I am not on ANY thyroid meds and still trying to get diagnosed so this is why I am anxious to know what my T3 result is - because if it is low as I suspect then that will indicate poor conversion.

    And I wouldn't need any T4 meds if that's the case.

  • Kk12, TSH rises in response to low circulating hormone, not because of poor conversion. Your TSH is 3.2 because your T4 and T3 are low, not because you aren't converting. T4 meds will raise T4 which will convert more T3.

    You will probably find a private endo willing to treat TSH 3.2. Your GP may agree to continue treatment but isn't obliged to continue the treatment of private endos.

    Another option is to buy Levothyroxine, T3, or NDT online and self medicate. If you have improvement in symptoms you obviously need thyroid replacement, despite NHS ranges, guidelines and protocols. If there is no improvement after 3 months it will rule out low thyroid as a cause of symptoms.

  • Ah I see what you mean - I know that my TSH isn't an ideal/optimal number and the fact is I do have many hypo symptoms over 50 plus ticked on the Thyroid UK website list so it is worth a go trying to go down the private Endo route who will hopefully look at all the clinical symptoms and treat me or I just self medicate.

  • DIM is good for any menopausal. Symptoms

  • Hiya it's so stressful I've literally gone private since NHS don't help over 10yr period not in the slightest at my worst I was told that my levels were fine tsh have andepressants! My symtoms at worst had effected every area of my life I couldn't even smile was fatigued obese and even suicidal. The last 7 months

    I have privately tested for everything and go to a private GP which takes all my wages only a childcare worker. I discovered PA and PCOS which was the reason for emotions and weight gain. I now at least can work with my knowledge unfortunately at a cost. I am also no longer under medicated as I regularly test thyroid panel through blue horizon and my private docter is giving me armour which I'm adding to the levo. I know it's crazy but I am know living again and the NHS didn't play any role in that. I wish you lots of strength for the journey.

    Love and light x

  • Kk12 you should have a short synachten test done to see if your adrenals respond to the pituitary hormone.

    If your morning cortisol is really <25 it is extremely and seriously low, meaning Addison disease or extreme adrenal fatigue and could certainly explain your symptoms.

    You will not be able to up your thyroid function or well being with such a low cortisol. Low cortisol levels and low thyroid function is very similar in symptoms.

    I can't believe your endo let you go without prescribing hydrocortisone!!!๐Ÿ˜ณ

    You should have immediate medical attention to up your cortisol level if you don't want to go into Addison crisis which can be life threatening!

    Your ability to raise your blood pressure doesn't signify Addison though, but you should have it checked thouroughly anyway!

    As to your weight gain I can strongly recommend dietdoctor.com, (Low carb high fat diet), which has helped thousands of people reclaiming their health and ideal weight.

  • That was the test and the tablet suppressed my cortisol levels to that extent which the Endo said it should do and that was that!

    I will add that I was massively stressed that night but still the Endo just shrugged his shoulders even though my result was massively out of range.

    I will no doubt find out more with the adrenal stress saliva test - I have been so busy the last few weeks - I need a day where I am not all over the shop to do it.

    My theory is that I got ill through a period of severe stress which is still ongoing. That seems to have triggered off menopausal and hypo symptoms - all the common hypo low vitamins & minerals were low in range for me B12, Vit D, folate & ferritin. I'm addressing all that and have started to feel better, certainly appear to have more energy and since taking Vit K with my D3 - thanks to this site, things do feel better.

    However, I still get really sore, dry, gritty eyes, I still have my migraines, I still have my weight gain, I still get weird aches and pains in my joints, my cycles all over the place. In short, I still don't feel balanced.

  • For a long time I wasn't aware I had PCOS with insulin resistance which keeps weight on me and cycles all over place! is linked to hypo!!

  • Thanks for the link to diet doctor :-) Seems like a genuine 'want to help as many people possible' kind of set up, how wonderful :-)

  • That's what I am eating rsae56 - low carbs and high fats. I was on a low carb and low fat diet when I lost weight. It seems that low carb and high fat is where it's not working for me now. I went onto higher fat products to cut down on the sugar that is often in low fat foods such as yoghurts and that's where I've gained weight.

    The diet doctor stuff is really good but so no good when nothing is working for me right now and my weight is still gaining!

  • Kk12 Maybe you're not low enough in carbs. Some people are extremely sensitive to carbs and put on weight just looking at carbs ๐Ÿ˜ you should check everything you eat. It shouldn't exceed 5gr carbs / 100gr. (you can extract the fibers from the carbs).

  • Of course I missed the dexamethazole part ;).

    No doubt that stress is the main reason for many of our problems.

    My aches and pains (FM) and IBS got better when I changed my diet to lchf 6 years ago. I still have my migraines too, but hope they will clear up when my thyroid will be in optimal range.

    Hope you will find the answers you need ๐Ÿ˜

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