I give up, what can I do?

[Bella426]

I went to see my endocrinologist today, waited for weeks. He totally dismissed everything, said I was within the normal ranges. I mentioned my cortisol was high, he said it’s a one off high reading. I mentioned my blood pressure was 141 over 89, he said that’s normal for people coming into clinic, my blood pressure is 120 perfect. I mentioned family history and all my symptoms, he said he is only going by my bloods. I give up 🤦‍♀️

[Shield-Maiden]

Hi Bella,

I just wanted to say "hello" and "do not give up, fight for yourself" ....or do what many of us do, on here, research, and, find a reliable source for buying medication (ie, Thyroid meds).

You will get some brilliant advice on here, from knowledgable friendly people....I am not as knowledgable as some about Thyroid issues...but I can tell that your TSH is very high, which to me, would suggest that you're under medicated ...but I will let the experts on here advise you.

Most Doctor's say that if your numbers are within range, then everything is okay...so not true.

To me, your T4 and T3 could be a little higher.

Hold in there...you have taken the first step to feeling your old self, ie, to feeling great again

All the best,

Shield

[NWA6]

Hi Bella. I hear ya, it’s just a fecking struggle to get anyone to listen 😩 Looking back at previous posts, has your TSH risen from 2.4 - 5.25 in a matter of weeks? If so you could be headed for that magic 10! That’s when GP’s will give you that little pill that makes your life super duper! Sorry, I’m in a really sarcastic mood tonight, because there’s just so many stories like yours and mine. We’re all on the same journey to destination ‘Optimal’ but travelling in different cars and for most of us we’ve got the dodgyest sat navs (aka medical professionals) giving us the wrong route or sending us down dead ends, or not giving us a route at all! It’s infuriating!!

Ok, now that I’ve got that off my chest! You are definitely hypothyroid. Your FT4 is barely in range and your FT3 isn’t much better! No wonder you feel horrid. The only good news is that even with such a low FT4, you may be a good/ok convertor, because your FT4 is only 25% through range but your FT3 is 43% through range, which is still low but would be much worse if you didn’t convertor well. So if you could get started on Levo, that may be just good enough. It’s easier to fight for more Levo than it is anything else.

I hope someone can advise you on cortisol, I haven’t a clue about that.

[Bella426 in reply to NWA6]

I just feel so deflated. He just patronised me. He was even originally only going to use blood results from my haematologist, until I produced my private full thyroid test results. These were the results from a very early blood test he was only ever going to use. This guy is a consultant specialist, what’s going on?

[Hidden in reply to Bella426]

He's probably a diabetes specialist. I'm infuriated for you. 🤬

[NWA6 in reply to Bella426]

It’s shameful, it really is, to use the word ‘specialist’ in their title. I know it’s hard, I know you feel like crap atm but stand firm in your beliefs because they are more true and having more bearing than anything those ‘specialists’ have to say. TSH - how long has it been since the result if 2,4 and then this one of 5.25? This is a really helpful question, I want to give you some hope.

[Bella426 in reply to NWA6]

I think he viewing me as a difficult patient, which I’m not. I pointed out my cortisol level was high, and so was my blood pressure, which I’d definitely unusual for me, he said that they are one offs, he made my feel like I was a mental patient, making it up

[NWA6 in reply to Bella426]

Can you answer my question? 🤗

[Tugun in reply to Bella426]

Don't worry about what he thinks of you - stay difficult! Patronizing is his ignorance. Don't let him deflate you or stop you from seeking out better health for yourself. Often you won't change their minds and I wouldn't go back to him - not worth your effort. At least that has been my experience. There are better doctors out there.

[Bella426 in reply to NWA6]

Sorry for late reply NWA6, I’d say it was roughly 10 wks or more. The first one was a basic one done by my haematologist for anaemia, he mentioned that it was on the low side.

[NWA6 in reply to Bella426]

No worrries, there’s so much for you to read and reflect on. It’s good news then, your TSH is going in the right direction to get a formal diagnosis. As hard as it is, I’d say stick with it so that you have get diagnosed on NHS

[Tugun in reply to NWA6]

Love your analogy NWA6

" travelling in different cars and for most of us we’ve got the dodgyest sat navs (aka medical professionals) giving us the wrong route or sending us down dead ends, or not giving us a route at all!"

😅

[humanbean]

I mentioned my cortisol was high, he said it’s a one off high reading.

I wonder where he got his crystal ball from? I'd like one too.

With comments about your cortisol like that he is talking out of his trousers not his mouth.

When the thyroid starts to fail it is common for the body to try and replace the low levels of thyroid hormones by increasing cortisol. It isn't a good substitute, but having low thyroid hormones AND low cortisol is even worse, as far as I can tell from experiences written about on this forum. High and low cortisol both make people feel awful. Symptoms of low and high cortisol have a lot in common and aren't precise enough to definitively say whether cortisol is low or high - they must be tested to be certain one way or the other.

I should also point out that poor adrenal function can have an impact on a healthy thyroid as well.

So cortisol can affect thyroid hormone levels and thyroid hormone levels can affect cortisol.

You might find these links of interest :

hypothyroidmom.com/cortisol...

paulrobinsonthyroid.com/hig...

...

In the short term, optimising your vitamin and mineral levels will help you to cope while your thyroid fails further and then hopefully your TSH will have risen to 10 or more which will entitle you to thyroid treatment from the NHS. But since you don't have any thyroid antibodies i.e. you aren't showing signs of Hashimoto's Thyroiditis to hasten the destruction of your thyroid it could be quite a long wait. But antibody levels do fluctuate so don't take one negative test result as 100% certain.

You might find this link of interest :

healthunlocked.com/thyroidu...

Sadly, thyroid treatment is very sadistic in the UK. The only help available until your thyroid fails enough for the NHS is to optimise and improve what you can by yourself.

...

CRP - This is a marker for inflammation, so the lower the better. Optimal is < 1 which yours already is.

Ferritin - In your shoes I would suggest that you raise your ferritin with food (if you can). I wouldn't suggest taking iron supplements just on the basis of a ferritin result for reasons given in this thread :

healthunlocked.com/thyroidu...

Optimal for ferritin is around 50% - 75% of the way through the range. Another, tighter, optimal that is suggested is 55% - 70% of the way through the range. Another suggestion is that, when the range is 13 - 150, that 80 - 120 is optimal or 90 - 110.

Magnesium - This test is not a good one. The body needs less than 1% of the magnesium in the body to be in the blood. If blood levels drop lower than this then the body will steal magnesium from other tissues. So, blood levels are often absolutely normal, but the patient could have many tissues which are magnesium deficient.

The body gets rid of excess magnesium via the kidneys, as long as the kidneys work. So, people can supplement magnesium without any form of testing if the kidneys are working.

If the kidneys have failed then magnesium should only be taken with medical support and oversight from a doctor.

You might find this link of interest, particularly Table 2 :

ncbi.nlm.nih.gov/pmc/articl...

Cortisol - I've already discussed this above. You can get more info on the state of your cortisol by doing a saliva cortisol test. The best test of saliva cortisol is the one from Regenerus. See the info and links in the Regenerus section on this page :

thyroiduk.org/help-and-supp...

Please note that saliva cortisol and blood cortisol are not testing exactly the same thing. So, high or low levels of cortisol in blood might look quite different in saliva.

I would suggest optimising as many things as possible before paying for a saliva cortisol test because diet, nutrients and thyroid hormone levels will all affect cortisol.

TSH - Over range

Free T4 - 25% of the way through the range

Free T3 - 44% of the way through the range

Optimal levels are very individual - we each have to find our own "sweet-spot" for T4 and T3 and where that is would be determined by the thyroid hormones you take. For example, NDT and Levo give different results and have different optimal levels

So, assuming you took Levo only, Free T4 would usually be one of the following :

50% of the way through the range or over.

60% - 80% of the way through the range

70% - 90% of the way through the range

Top of range or over the range (this would be rare as a "sweet-spot" for T4 I think)

For Free T3 the optimal result when taking Levo is usually slightly lower than that for Free T4.

If you were taking T3 only, Levo + T3, or NDT your optimal results would probably be quite different when compared to results while taking Levo only.

In the real world TSH > 3 is a sign you are hypothyroid, and apparently in some countries you would receive treatment at that level. In the UK you have to wait for TSH to be > 10 which is so sadistic it is soul-destroying, and destroys health generally (in my opinion).

It is possible to treat yourself with thyroid hormones bought on the internet. But that has drawbacks if you have no official diagnosis.

1) There is the possibility you might be supplied with fake tablets, or you might get your money taken and get nothing in return.

2) You won't get a diagnosis from the NHS. If you start treating yourself it will reduce your TSH and it might never rise as high as it was before you started treatment. You would have to come off your self-sourced treatment to have any hope of getting a diagnosis and you might end up on no treatment for many months or, if the NHS has its way, possibly for ever.

3) Self-treatment may be very expensive depending on the form of thyroid hormones you needed. There is also no guarantee that self-treatment from abroad will be legally possible from the UK for ever.

4) If you self-treat it will almost certainly involve additional costs in the form of regular private testing.

TPO and Tg antibodies - Your results are currently negative, suggesting that you don't have Hashimoto's Thyroiditis. But if you ever get a positive result then you have the condition even if the numbers drop again later on.

Vitamin D - This is just a smidgen below optimal, so shouldn't be a major concern.

Optimal is variously stated as being 100 - 150 nmol/L or 125 nmol/L. If you ever decide you need to supplement then this link will be helpful for calculating the necessary dose :

grassrootshealth.net/projec...

Vitamin D supplements will raise calcium absorption from the diet. You want that calcium to go into bones and teeth, not end up lining your arteries or clogging up your organs. To achieve this you need to take magnesium and vitamin K2 as explained by SeasideSusie in many of her replies to others. You can find her posts and replies here :

healthunlocked.com/user/sea...

The reference range for B12 in your test (a serum B12 test) is, in my opinion, absurdly low. Note that the Active B12 test is a much better test than the serum B12 test.

Optimal for serum B12 is usually specified as being one of the following, depending on source :

1) 500.

2) Between the minimum of 500 and the top of range.

3) Top of range.

4) 1000 pmol/L.

Allegedly, the Japanese think anything below 550 is deficient, and the top of their range is about 1300. And they have much lower levels of dementia than the UK.

perniciousanemia.org/b12/le...

Folate - Optimal for this is upper half of the range, which for your test is approx 35 - 61.

For info on supplementing the right type of folate read this link :

chriskresser.com/folate-vs-...

You should supplement with 1000 mcg of folate per day until your level is in the upper half of the range and then reduce dose to 400mcg per day to maintain your level.

[Bella426 in reply to humanbean]

Thank you sooooo much humanbean xxx

[JAmanda]

My doc treated me when my tsh was this level because I had other symptoms including fatigue, high cholesterol and weight gain. And I’d had similar levels over a period of years actually, but I think the rule is two results over a period of months for them to start medicating.

[Carys21]

Exactly what happened to me, as suggested optimise your vitamin and mineral levels but don't wait for your thyroid to get worse and rely on the NHS. I bought Thyrovanz and then Metavive to treat myself 2 years ago very successfully. I believe this has stopped my thyroid deteriorating any further. The NHS (probably) won't treat you until you are much worse and even then they will only give you T4 which doesn't work for everyone.

[Bella426 in reply to Carys21]

Carly would you private message me please, where I can buy these products from xx

[Carys21 in reply to Bella426]

done

[Satva]

Hi! Bella. Sorry to hear your experience with your consultation. After my own frustrations I decided to look at my diet and exercise. I now walk almost every day, doing between 4 to 6 miles, I 'bounce' on a Bellicon rebounder, which stimulates the lymph system, increases oxygen, helps metabolism and the thyroid and gets you fit! Google the benefits of rebounding on the thyroid and also the effect wheat has. There is research being done on wheat/grains/gluten. I can't post the link just now.

I've given up sugar, only eat apples & berries, have cut out gluten and rarely eat wheat even if gluten free. I eat loads of veggies, and try not to eat too many carbs. I've lost weight, feel so much better and depression lifted! I also take supplements.

It has made such a difference and I feel so much better. I still take 50mg of levo as my check up blood tests are not due for a while.

I wish you well and hope you start to feel better soon.

Take care.

[Lizzo30]

You could try taking magnesium or melatonin in the evening to counter high cortisol if you have trouble sleeping Magnesium might be your best bet as it can lower high blood pressure too magnesium also helps to convert t4 to t3

Dont get a cheap magnisium though - Holland and Barrett sell a liquid magnesium which is bettet than their own brand magnesium oxide

[Hidden]

Unfortunately there aren't many Endocrinologists who are conversant with pituitary/adrenal issues & this one certainly isn't! He should have done further investigations to see why your cortisol level was high & not dismiss it. You could ask your GP to do a 24 hour urine test for cortisol as it's quite an accurate test to see if there is too much cortisol in your body. He could also do a Dexamethasone suppression test although the GP may say that needs to be done by an Endo. As others have suggested you could do some private tests & if they are high then ask to be referred to another Endo. if you tell me where you are in the country I can pm you a hospital who are conversant with these kinds of issues. i wouldn't take any supplements until you've found out the cause of your issues as they will mess up any further testing you may need.

[Batty1]

Maybe charting your blood pressure levels everyday and if it is actually high take that information to your doctor and I would be a horrible mess with my TSH being over 5 I actually had over 5 TSH after my thyroidectomy and I was a raging lunatic and pretty darn scary according to my mother.