Thyroid UK
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Feeling like giving up

So i just called the hospital to enquire if my appointment came through. I was referred August 11th last year, was told there was a 6 month, 8 month, 12 month and then 15 month wait. I went back to my dr as i have symptoms of cushings and after posting my results here, have been informed my results indicate Hashis (something my dr has never told me) The appointments office have told me that after being referred i have been discharged (without ever seeing anyone) and after my second reults have been sent through again as a 'routine' I have also been discharged again. My dr has not informed me of this. I am in tears. I have been waiting on this appointment for a year now. It was my last hope of finding anyone to listen to me and take me seriously and to investigate all my symptoms. I will now have to go private. Has this happened to anyone else?

23 Replies

Hello EasyPeasy12, its no wonder you're upset -I would be too. That seems ridiculous to not even see you and give you chance to ask your questions. Being ill makes it even harder to cope with. I don't have any answers but I do want to reassure you that the people on this forum will listen to you, take you seriously and understand how you feel and you will somehow find a way yourself to feel better. Just wanted to send you my best wishes as I've been there xx


You need to make an appointment to see a doctor and take someone with you as a witness - a partner, parent or friend. Make sure the person you take knows what you expect of them before the appointment, and make sure they back you up if they say something. Try not to cry. As someone who regularly bursts into tears in the presence of doctors I know how hard it is, but I know that tears are more likely to get you a prescription for anti-anxiety meds or anti-depressants.

You need to know why you keep getting your appointments cancelled if the doctors think you have Cushing's Syndrome. It isn't a trivial problem, so you shouldn't just be allowed to rot. Point out some of the consequences of not treating the condition if you have it.

Ask things like ...

Can I be referred to a different hospital?

Is there any more testing that can be done by the GP which might help me get seen?

Is there anything I can do to help myself? [Note - if the doctor suggests going on a diet, ask how someone with untreated Cushing's is supposed to lose weight.]

Who can I complain to about not getting an appointment? [You might want to leave this question out - it depends on the response you are getting from the doctor. I wouldn't bring up the subject of complaining unless you absolutely have to. I've never complained about the NHS or doctors in my life, so I couldn't tell you how it is likely to go.]

Read these links - the first link is designed for patients, the second for doctors :



You really need to make a plan before you see a doctor to discuss the problem, so that you find out what you need to know, and how to move the situation in a direction that gets you what you want.

Charities are another source of information, and they may have forums that you can ask questions in.


Referring to the stretch marks you've developed, from personal experience I know that they will fade and become less noticeable as time goes on, but it could take a long time. I was very ill in my early teens and I developed symptoms that, looking back, I would say were indicative of a Cushing's type problem. I had lots of stretch marks that were purple. They faded to be very close to skin colour - almost silvery.


Thanks for this... i'm an overly emotional person at times so taking my partner next time, he has a great way of staying calm and getting his point across! i need answers and i'm just frustrated they seem to think i'm ok when i know myself i'm not! I'm going in armed with those questions, so thank you


Make sure your partner is well prepared and coached in advance too. :)

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He is one of those people who should have been a lawyer ha

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I have heard that Cushing's can also be a sign of undiagnosed Spontaneous Spinal Fluid Leaks some can have multiple leaks or tears...Dr. Ian Carroll at Stanford is finding this so are other Teams now in the USA he has put out a few Videos on

YouTube as awareness also they use a CT Myelogram as well it is usually missed on MRI's hope this helps you to get a diagnosis & taken seriously. There are some Doctors in the UK who treat these leaks as well but not all Hospitals know about

these procedures they use blood patches or Glue or in some Surgery is done. Never ever give up always remember in time you will be better so have hope & if you are not coping talk to someone or get help Hope you feel betta soon hugs blesses...


I'm sorry you feel so miserable and how frustrating to wait for a year and hear nothing only to find out your referral has been knocked back! A lot of us on this forum have found that we have to help ourselves and get private blood tests done for things the NHS does not do. We have to take control and we can't wait for Endocrinologists to decide what to do. Ask your doctor on what basis he or the other doctors have decided your problem is not Cushings and what blood tests indicate this is unlikely. Where is the evidence?

Looking back at your posts it looks like you've had your vitamin levels checked and B12 is low, is that right? What have you done about it so far? I couldn't find a test for vitamin D, did you have one done? I can't find any results for thyroid antibodies, have you had those tested? TPO & Thyroglobulin?

Rather than paying a lot for a private consultation, why not first of all get those tests done through Medichecks, Blue Horizon or another reliable lab and post the results here. Then we can help you to work out what's going on. You can find information about private blood tests on Thyroid UK's website. The labs give prices against the various options. Create a post and ask people on here which are the most helpful labs to have done before sending off for the blood test.

A lot of us are getting better or improving through optimising our vitamin levels, going gluten free and sorting out low stomach acid which prevents absorption. Thyroid dysfunction affects so much of our bodies, it feels like our bodies are going into a tailspin out of our control. We've been finding that nothing works well until our vitamin levels are optimal and our gut issues are sorted out. It seems that with hypothyroid conditions, the gut absorption is affected and nutrition and diet have to be helped as a good diet is not always enough, often supplements are needed. Levothyroxine works better when our nutritional needs are met.

Some people on this forum have suggested taking Betain HCL with Pepsin. Others take a desertspoon of organic apple cider vinegar with the mother and a glass of water before each meal to help regulate stomach acidity.

Learn all you can on here about how to get better, It's something you have to keep working at. Don't give up, everyone is here to support you.

Sorry, just seen the TPO antibodies so yes, Hashimotos, so really important to get gut issues sorted. Try gluten free?


It's an abomination that we need to take so much control to get ourselves better! I know ultimately it's our responsibility but drs really have no clue how much this affects our lives. I've just ordered the blue horizon so will get the results on here asap! I really appreciate all your knowledge and help, sometimes it's like drowning in a sea of thyroid do's and don'ts so clarification is great 😊


I know, I found it all very confusing for quite a while. And you're right, docs have no idea how it affects our lives. I'll look forward to seeing Blue Horizon results. One step at a time hey? Blood tests are the first step.

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I know, i'm excited for them myself!! ha

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Looking at your previous posts I found these results :

Hypo on 300 levo per day

Serum tsh level 1.52 mu/l (0.27 - 4.2)

Serum free t3 level 4.2 pmol/l (3.1-6.8)

Serum b12 221 ng/l (197-771)

Serum folate 10.2 ug/l (3.9-26.8)

Serum c reactive protein level 4 mg/l (0-5)

Then some later results :

Erythrocyte Sedimentation rate 19 mm/hr (2-15) High

Serum C Reactive Protein Level 5/mg/L (0-5)


Serum Cortisol 435 nmol/L


Serum Free T4 level 13.0 pmol/L (12-22)

Serum Free TSH 3.99 mu/L (0.27-4.2)

Anti-TPO Antibodies- SE Thyroid Peroxidase AB Conc 108 IU/mL (1-34) HIGH


Lymphocyte Count 2 am*9/L (1-3)

Monocyte Count 0.31 10*9/L (0.2-1)

Neutrophil Count 3.79 10*9/L (2-7)

Eosinophil Count 0.15 10*9/L (0.02-0.5)

Basophil Count 0.03 10*9/L (0-0.1)

Haemoglobin Estimation 123/g/l (115-165)

PCV 0.376, will be filed as 4257.00 [NOTE - PCV = Packed Cell Volume = haematocrit]

RBC 3.88 10*12/L (3.8-5.5)

MCV 96.9 fl (83-101)

MCH 31.7 pg (27-32)

MCHC 327 g/l (310-350)

Platelet Count 295 e9/L (150-400)

WBC 6.3 e9/L (4-11)


Plasma Glucose Level 5.0 mmol/L (3.9-6.4)


Serum Total Bilirubin Level 5 umol/L (2-21)

Serum Alkaline Phosphate 97 U/L (30-130)

Serum ALT Level 15/UL (5-33)

Serum Gama GT Level 27 U/L (6-42)

Serum Total Protein 68 g/l (60-80)

Serum aLBUMIN 42 G/l 35-50)

I wanted to summarise the above results.

To find out about test results this is a good site :

1) The Erythrocyte Sedimentation rate and the C Reactive Protein are both high, or high in range. These are both inflammation markers, suggesting that you suffer from inflammation somewhere - unfortunately neither test tells you where that inflammation is.

2) Your serum cortisol level - whether or not this result is high is determined by the time of day the blood was taken.

3) Your thyroid test results show that your TSH is higher than ideal, your Free T4 and Free T3 are lower than ideal, and your antibodies are high showing that you suffer from autoimmune hypothyroidism also known as Hashimoto's Thyroiditis. Note that about 90% of people with hypothyroidism in the UK have it because of Hashi's. As a result of having Hashi's your thyroid function test (TFT) results will fluctuate, possibly quite dramatically.

4) Your Plasma Glucose was roughly mid-range suggesting that you aren't diabetic.

5) Your Full Blood Count (FBC) shows your haemoglobin is in range which means you aren't anaemic. You could still have low iron without being anaemic though, but you haven't given results for iron and ferritin so it isn't possible to tell. Your bottom of range RBC suggests low iron is a possibility. The other values in your FBC don't suggest obvious problems.

6) Your vitamin B12 and folate are too low for most people to feel well. Neurological problems can occur with B12 below 500. Many of us prefer to get B12 to top of the range, and folate to mid-range or the upper half of the range. Take a look at replies by SeasideSusie who give lots of very good info on treating low minerals and vitamins.

7) Note that low in range B12 and folate may have an impact on FBC results. If you have low iron AND low B12 then the issues can be disguised in the FBC. MCV, for example, is raised when B12 is low, and is low when iron is low. If you have both problems your MCV can look normal.

8) Your Liver Function test results are normal.

I'm going to continue this in another reply.


Woah, Humanbean... Honestly don't know what to say! Thanks so much for all of this, this is exactly what i needed to see so i know roughly where i'm at and know what to say to the Dr next time i see him so he doesn't pawn me off.

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Since your main concern is Cushing's Syndrome, the first obvious thing to suggest you do for yourself is to buy a private saliva cortisol test. Several companies offer this - Genova Diagnostics UK, Blue Horizon Medicals, Medichecks, Regenerus Labs.

Genova and possibly Regenerus offer saliva cortisol testing which also includes a DHEA test. Blue Horizon and Medichecks don't include DHEA.

On the basis that I've used them myself I'll discuss the Genova test.

Genova don't deal directly with the public, they only deal with doctors (which is HUGELY annoying), but there are ways around it. This link tells you how to order and how to get your test results :

This has more information specific to Genova :

The specific test you need is this one :

Read the Description, Analytes, and Requirements. Also read all the links in the Additional Resources section down the right hand side of the page. The current (discounted) price to Thyroid UK members is £82 if they quote the relevant discount code : Thyroid UK code A42AQ.

To see the kind of results you will get see these links - note that only a few are relevant, they aren't all results from a cortisol saliva test, nor are they all Genova tests. Also read the replies to see what kind of information can be gleaned from the results :

Continued in next post...


Until you have more info on your cortisol I can't say any more about that.

Based on some of your symptoms, low B12, the possibility that you have low iron, as well as the high(ish) inflammation, and the high dose of levo you take along with the less than ideal thyroid results and the thyroid antibodies, I am suspicious about the state of your gut.

Having poor gut function is almost universal amongst the patients who end up here with hypothyroidism. One of the effects of the condition is to lower stomach acid. Low stomach acid reduces absorption of Levo or other thyroid hormones, reduces your body's ability to extract nutrients from food, causes inflammation, increases the risk of parasites and infections getting a hold. You could also have Helicobacter Pylori. You probably have leaky gut (a condition that many doctors don't believe in - but the treatment for it is good for the gut anyway, so it doesn't really matter whether doctors "believe" or not).

1) You could ask your doctor for a Helicobacter Pylori (H. Pylori) test. (But don't do it when you are discussing Cushing's - that would just annoy them if you introduced a completely different subject.)

2) Search the forum for posts about stomach acid and how to deal with it when its low.

3) Go gluten-free - 100% ruthlessly and religiously. It doesn't matter whether you've been tested and found negative for coeliac, it is worth trying anyway. The testing is unreliable.

4) I strongly recommend you join this community and read lots of posts :

5) Do searches on the forum and on google for leaky gut, dysbiosis, sibo, Betaine HCL with Pepsin, apple cider vinegar, Chris Kresser, scdlifestyle.

6) Get tests done for nutrients you haven't had tested - an iron panel, vitamin D, then post them.

Okay, you'll be pleased to know I'm done now. :D


No thank you so much for taking time out! I'm printing this all out and setting out a plan...i have been to a gastro and am currently waiting on an appointment for a camera down the throat (i can't think of the name right now lol) Honestly, thank you so much for all this!

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On the subject of acid many of the symptoms of low and excess stomach acid are the same. The majority of hypos with acid symptoms have low stomach acid not high but Docs assume the reverse, dont think they are even aware of low acid/hypo link.

If you google it there is a bicarb test you can do, you just take a measured amount of bicarb and see how long it takes to burp. Slow means low acid.

The sphincter at the top of the stomach is partly controlled by acid levels it closes tight to prevent damage to the oesophagus but if acid is low it doesnt shut tight and leaks, we then get heartburn/acid reflux, get given antacids which relieves the heartburn as our stomach now contains the equivalent of water, this also buggers our digestion and it becomes a vicious circle.

If you already take any form of antacid are you aware to take them well away from any meds or supplements as they will prevent absorption, especially the stomach coating ones and the others are often chock full of calcium carbonate which does the same.

I used to take rennies like smarties but now i have addressed lousy nutrients and meds are optimal, no more indigestion or reflux or need for additional acid support.


There are a couple of things here that you may need to look at

1. Where is the appointments bookings office? Is it a hospital appointments office? Many areas employ a GP booking/referral management service who get paid to reduce GP referrals. These are third party services and are based in remote offices with non medical staff who look for key words and phrases to match criteria. Often waiting lists are closed if the waiting time exceeds 18 weeks. This is a way of avoiding breaches. They reopen when there is capacity.

2. If your GP referral letter is poor and not giving sufficient details you maybe refused an appointment as it does not meet the criteria. I would ask for a copy of the referral letter from your GP you are entitled to have a copy. I get mine in my online account. If your GP is not mentioning specific conditions with a good description you will not be listed. If a GP reports significant concerns you should be offered an appointment.

I have previously come up against Greenwich Referral Booking and Management Service which resulted in a formal complaint. I like you gave up and sought a private appointment but there should have been no need as it is a long term condition looked after by 3 specialists.


I think the 2 GPs that sent the referral gave a poor letter to be fair. I'm going to request a copy. The appointments are in the hospital itself and i was told the discharge letter would be sent to my GP. How did you find the private treatment you received? I am so reluctant as it is a lot of money but again, it's my health at stake here.


It was not for Hypothyroidism but the Lichen Planus. I self referred to a dermatologist and ended up on steroids for a year. Moved house new DENTIST referred urgently to NHS Oral Medicine as he was shocked at my treatment and my v sore mouth now have an NHS team. Thyroid is major problem no satisfactory treatment as can't get past ignorant GP 🤔

I still do not understand how you can be discharged without ever being seen. I will ask my OH who works in NHS.


Thanks, it just seems so strange without being seen!

That's awful you had to go through that and only got it sorted when you moved!


Hey, EasyPeasy12, you're on your way now, I hope you don't have to pay for private care, if you don't want to, and can get the NHS to work for you. With all the great advice from these experts you'll be well informed for your next GP appt!!

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This may depend on the CCG where you live. In some areas it's possible for the CCG to intervene so that an appt. is cancelled and you're discharged without being seen if the blood test results fail some criteria despite a GP recommendation. E.g., TSH and T4 for hypothyroidism; and it's a known issue for seronegative inflammatory arthritis for which seronegative results are a big clue to the diagnosis.

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I know exactly how you feel. I have now been left waiting a year for a proper reply to my formal complaint about the blacklisting of NDT to my local APC. They are creating delay after delay and I need the reply to provide as evidence to my MP, before I make appointment to see him.

I wrote last week to state that the problem should now be taken above her pay scale and requires a public enquiry, but she seems reluctant to reply for some reason!

It's up to each and every one of us to keep hammering at these idiots until we finally knock down the door and get proper treatment.

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