Endo called - Am I being fobbed off?

I had a phone call from the Endo today about the ultrasound report and other things but first of all:

Blood tests

Nov 2011

TSH - 5.2 (0.2-4.2)

FT4 - 16.8 (12-22)

Feb 2012

TSH - 2.2 (0.27-4.2)

No FT4 as TSH was normal range

Jan 2013

Anti-TPO - 84,000 (<34)

TSH - 0.69 (0.27-4.2)

No FT4 was TSH was normal range

May 2013

TSH - 22 (0.27-4.2)

FT4 - 10.9 (12-22)

Alkaline Phosphatase - 66

Total protein - 82

Albumin - 44

Globulin - 38

ALT - 12

Glucose - 4.6 (<10.1)

Potassium - 4.4

Sodium - 141

Creatinine - 66

Urea - 3.2


Haemoglobin - 153 (120-150)

Red blood cell count - 5.33 (3.80-4.80)

MCH - 28.7 (27-32)

MCHC - 350 (315-345)

MCV - 82 (83-100)

White cell count - 7.16 (4.00-10.00)

Platelet count - 328 (150-400)

Lymphocyte - 2.13 (1.00-4.00)

Basophil - 0.02 (<0.11)

Neutrophil - 4.23 (1.50-7.50)

Monocyte - 0.48 (0.20-1.00)

Eosinophil - 0.30 (<0.51)

Haematocrit - 0.44 (0.37-0.45)

Aug 2013

TSH - 4 (0.27-4.2)

No FT4 as TSH was normal range

Ferritin - 15 (30-400

White cell count - 5.20 (4.00-10.00)

Red blood cell count - 4.94 (3.80-4.80)

Haemoglobin - 141 (120-150)

Haematocrit - 0.42 (0.37-0.45)

MCV - 85.8 (83-100)

MCH - 28.5 (27-32)

MCHC - 333 (315-345)

Platelet count - 285 (150-400)

Neutrophil - 2.66 (1.50-7.50)

Lymphoctye - 1.85 (1.00-4.00)

Monocyte - 0.47 (0.20-1.00)

Eosinophil - 0.20 (<0.51)

Basophil - 0.02 (<0.11)

Nov 2013

TSH - 4.3 (0.27-4.2)

FT4 - 15.3 (12-22)

FT3 - 5.5 (3.1-6.8)

Dec 2013

Anti-TPO - 41,000 (<34)

TSH - 4.6 (0.27-4.2)

FT4 - 15.6 (12-22)

Ferritin - 22 (30-400)

Vitamin D - 43.6 (>75)

Vitamin B12 - 363 (180-900)

Hep2 - Positive ANA (speckled)

Glucose - 4.9 (<10.1)

Plasma Viscosity - 1.64 (1.50-1.72)

Jan 2014

TSH - 2.7 (0.27-4.2)

No FT4 as TSH normal range

Basal Cortisol - 622

Short Synacthen Test - 30 mins - 915, 60 mins - 985

HbA1c - 33 (48-59)

Testosterone - 0.7 (0.2-1.7)

Prolactin - 251 (0-700)

LH - 1.4 (Follicular phase - 3.2-8.0, luteal phase - 2.4-7.2)

FSH - 2.5 (0-6.0)

Rheumatoid Factor - 9 (<20)

Sodium - 141 (133-145)

Potassium - 3.9 (3.5-5.3)

Urea - 1.6 (2.5-7.8)

Creatinine - 54 (50-95)

eGFR MDRD - >90

Bilirubin - 7 (<21)

Alkaline Phosphatase - 59 (30-130)

ALT - 9 (5-40)

Albumin - 45 (35-50)

CRP - <1 (<6)

Calcium - 2.42 (2.20-2.60)

Calcium adjusted - 2.37 (2.20-2.60)

Other tests

MRI Head and Neck February 2012 - normal apart from enlarged tonsils

Ultrasound Neck February 2012 - "Mildly enlarged thyroid and mildly vascular"


Levothyroxine doses

23 May 2013 - 7 June 2013 - 25mcg

8 June 2013 - 22 June 2013 - 50mcg

23 June 2013 - 9 August 2013 - 75mcg

10 August 2013 - 12 November 2013 - 125mcg

13 November - onwards - 150mcg

Vitamin D

12 December 2013 - 14 January 2014 - 800IU

15 January - onwards - 3000IU

Vitamin B12

15 January onwards - 1000mcg

Iron (Spatone)

October 2013 - December 2013 - 1 sachet

January 2014 - 3 sachets


* Depression

* Fatigue

* Constipation worse when eating wheat/flour/gluten. I was told this is not coeliac disease as diarrhoea occurs after eating wheat/floud/gluten and a coeliac screen was negative

* Dry/flaky skin

* Joint pain

* Heavy/early/late/short periods

* Short menstrual cycles - every 22-25 days (they were every 27 days)

* Painful periods

* Clumsiness/falling over/slipping/stumbling/dropping things

* Blackouts

* Acne

* Hyperpigmentation on back, legs and around eyes

* Puffy eyes

* Hair loss at outer third of right eyebrow

* Raynaud's

* Intolerance to cold

* Inability to gain weight (currently 7 stone 10 pounds/49 kilograms and body mass index is 19.7 - just about healthy)

* Slow heart rate - currently 54-63 beats per minute

* Low body temperature - currently 36.4-36.9 Celsius

* High blood pressure - has been as high as 131/95

* Mood swings

* Brain fog/forgetfulness

* Cramps

* Muscle weakness

* Excessive daytime sleepiness

* Nausea - seems to improve after eating something sugary

* Headaches - seem to improve after eating something sugary

* Watery eyes

* Easy bruising

* Pale skin

* Thin/fine hair

Family history

Mum - Diabetes Type 1 and Primary Progressive Multiple Sclerosis

Nan - Diabetes Type 1, High Cholesterol and Angina

Grandad - High Cholesterol and stroke before 40.

Other information

* Had infantile eczema/chickenpox

* Underwent operation in 2011 for a repair to the iliopsoas tendon (tendon in the hip) due to Hip Tendinitis/Snapping Hip Syndrome

* Have got generalised joint laxity/hypermobility

Situation at the moment - Endo will not do ultrasound - big resounding no from her despite the scan being done 2 years ago clearly showing it to be enlarged. Obviously the thyroid was not enlarged enough to have further investigations done but why my previous practice not mention anything about it is beyond me.

Thyroid function tests will be done once a year for patients on thyroxine and have had normal TSH results whilst taking their medication - unless they have symptoms, which I do. So I don't see why she is basing my hypothyroid symptoms on other causes which have since been ruled out.

Addison's has been ruled out through a normal Short Synacthen Test.

I have no connective tissue disorder as I have normal inflammatory markers and been tested negative for Anti-Ro and Anti-La antibodies in Sjogren's and Scleroderma. This is despite me getting Raynaud's when out in the cold and the photos of my toes clearly showing white, dispersed discolouration.

She has also said that if I have one autoimmune illness I could easily have another. So what I don't understand is why I'm not going to an immunologist at all if she thinks I have more than one autoimmune illness. She's just going by test results now, surely?

I think this is now becoming a bit of a joke. Anyone agree?


Jo xxx

33 Replies

  • Hi Jo, Please don't take this the wrong way, but why do you keep going back to the GP and the endo when they are clearly not going to help you? You obviously spend a lot of time investigating your symptoms and illness yourself and have become very knowledgeable. I have to suggest to you again that you need to take it a step further, take charge of your own health and get some help from a doctor who will listen to you. I'm sorry to say this, but the GP will not change. Any change in direction has to come from you. This is what many of us have been forced to do, and I really think that's the best option for you now.

    Have you bought the book I recommended? I think you'd find it a revelation.

    Jane x

  • Hi Jane, thanks for your comment.

    I'm considering getting the book you suggested, yes.

    I don't know what more I can do being on the NHS. I can't afford to go private and the GP only deals with generalised complaints, not the more advanced ones I have. Would it best to send a letter to the practice manager?


    Jo xxx

  • Why send a letter to the practice manager? jane x

  • Sorry, I didn't explain.

    Well, I have other issues which I didn't think would have been relevant to my hypo diagnosis when with the Endo. I have:

    * Joint hypermobility in spine, hips, knees, wrists and elbows

    * Easy bruising

    * Small cuts/tears appearing in skin.

    Endo didn't want to consider a rheumatologist getting involved but I now think she really should based on these other symptoms. I have had these for a while, just never really spoken about them.

    Jo xxx

  • Hypermobility and easy bruising are symptoms of thyroid disease.

  • That's funny as my doctors have never linked hypermobility and easy bruising to thyroid disease.

    Thanks for letting me know about this.

    Jo xxx

  • But it doesn't matter Jo, there are so many symptoms that can all come under the same thyroid disease umbrella, you will drive yourself crazy looking for explanations for every symptom.

  • Isn't hypermobility 'double jointedness'?

    my DIL has it & whilst an amazing gymnast is very prone to cold, joint pain, fatigue (collagen problems?) - similar symptoms really - so a bit of a double whammy if thyroid probs too, she also has endrometriosis & doesn't eat much :(

  • These can all be thyroid related, but are often not picked up by doctors as such. It may be that your thyroid malfunction has caused them or that your thyroid problem is also a symptom of some other disruption in your body. I sent info about these possibilities a while ago. Try to see someone privately who will look at the big picture. Jane x

  • Hi, I'm sorry to hear that both your Endo and GP are unwilling to help you. I think that's the case for many people. I actually lost my job because of my illness and still got no help from the NHS. In fact the treatment my former GP prescribed (antidepressants ) made me feel worse.

    In the end I decided to go private. I found a doctor who didn't require Gp's referral. He prescribed me T3 and HC. These made a huge difference to my well being. Many of my symptoms disappeared or at least improved.

    I know you don't work so going private is difficult. But going to a private doctor may be your only option if you want to feel well. Some of them don't charge that much and if you respond well to treatment you wouldn't have to see them that frequently. They might at least point you out in the right direction.

    I wish you good luck.

  • Hi Jow11, thanks for your comment.

    I'm going to look into going private as long as they don't quote a lot of money to be paid.

    Like yourself I left my job due to illness but took the redundancy money and went.

    I know my boyfriend won't like it due to more money coming out of my account but more can I do if GPs and Endos won't help or go the extra mile?

    Jo xxx

  • Hi Jo, if you do decide to go private I hope you find someone affordable and who can help you.

  • Thanks Jow11. :) xxx

  • Jo,

    Repeated tests are not going to make you feel well, they mostly confirm or rule out obvious suspects. There simply isn't a pill that can cure all symptoms and conditions.

    Your symptoms are consistent with hypothyroidism which predisposes you to other autoimmune diseases but doesn't mean you have them now or will do in the future. If most of the symptoms aren't relieved by your current meds then the dose needs adjusting, the brand changing, T3 added or NDT trialled to see if that helps your symptoms. Introduce changes one at a time, gradually, so you can note improvements or worsening effects.

    Your GP has refused to increase your dose. You can increase it yourself and see if it helps. If you overmedicate you'll experience racing heart, palpitations and perhaps diarrhoea.

    If you're taking Mercury Pharma, tell the pharmacist you want to try Actavis or vice versa. Both are generic and don't have cost implications.

    Buy T3 online and add to your current T4 and see if that makes a difference, or buy NDT online and trial that.

    Why do you need a diagnosis of Reynaud's? There isn't a cure for it. You can only manage the symptoms by keeping your core and exremities warm to avoid white and painful fingers and toes.

    Eat normally, including gluten, until your coealiac screen. If the screen is positive you will have to observe a gluten free diet for the rest of your life. If you already feel better eating gluten-free is there any point reintroducing it to get a coeliac diagnosis? If the screen is negative (bearing in mind the screen is inaccurate) you might still benefit from a gluten free diet and trial and error is the only way to tell if you're benefiting. The Paleo diet might be worth trying to see if that helps you. You might need to try eliminating all sugar, wheat, milk, dairy and eggs and see if that helps.

    You've pushed your GP and endo as far as they're willing, or able, to help you and now you're going to have to research and trial your own remedies but you'll get plenty of support here, so you're not on your own.

  • Thanks Clutter.

    I needed a diagnosis of Raynaud's because the Endo asked me about it. At the time I saw her I didn't suffer from it visibly as my toes went back to normal colour so I didn't want her to think I was making it up. However she still put in her report that I did not show signs of it.

    Jo xxx

  • Hi Joe,

    I totally understand your frustration with whats going on. But please dont put yourself through this anguish all the time. I was diangnosed in 2010 with Hashimotos and have spent the last few years backwards and forwards to the doctors, waiting weeks and months to go see a specialist only to be told everything is fine. And from their point of view it is, if my thyroid results are showing within the normal range then thats that.

    I didnt know about thyroiduk at the time, but now i am taking things into my own hands and having tests that i think i need. Of course money is an issue so i have had to decide what is most important. And for me that is trying to get better.

  • Hi Christine, thanks for your answer.

    I'm going to go private as I've spent too much of my time and energy on the Endo and GP.

    Jo xxx

  • I'm no expert but I agree with the previous posters really. You have had extensive testing, you clearly have a thyroid issue already diagnosed, plus low ferritin, B12 and vitamin D.

    I'm not sure how a thyroid scan helps you? Negative antibodies for autoimmune isn't a guarantee but normally those diseases would show inflammation markers (esr, crp) or something. So based on those results the chances of having one at present are slim and the chances of being diagnosed are even slimmer.

    I have undiagnosed raynauds too.... for some reason this year has been better than most but it can be agony when it is bad. Again I'm not sure how a diagnosis helps as treatments are quite limited unless severe. I find keeping the whole body warm is equally and maybe more important as good gloves/socks and shoes.

    If it were me I would give it a little time for the B12, iron and D3 supplements to kick in. Then perhaps consider if you want to push for a T3 test (or get one privately is probably easier) to see if you are converting T4:T3. Generally I am uncomfortable with the idea of self-medicating and I definitely wouldn't self-medicate with NDT or T3 without having a test before hand.

  • Hi Yenool thanks for your reply.

    I was made out to be an idiot by my last GP practice as they did not want to discuss my ultrasound report with me due to it never being received by them. So I have had to chase it up myself.

    I have positive antibodies for ANA on HeP2 (speckled) and I have elevated Anti-TPO antibodies.

    I've spent a lot of money on a private test for T3 which was normal and I do not work at the moment. So I'm not really comfortable arranging for another one to be done at present.

    Jo xxx

  • Jo, just out of interest what do you think is causing the symptoms? You are more in tune with your body than anyone else ever can be.

  • I'm convinced my symptoms are hypothyroid but I have hyperthyroid ones too such as inability to gain weight.

    Jo xxx

  • oh Jo I really do feel for you,you seem to be torturing yourself over 'what ifs'.as clutter said there isn't a pill known that can cure all ills,if only that were so!

    From what you have posted you seem to have been thoroughly checked over and all the results for the major issues that cause real serious desease have come back clear.If you could rejoice in that knowledge and relax now a little,you mayfindthat Alone will help you feel better. Try to allow yourself time to see if benefit comes,on the thyroid front, from the supplements you are now taking.hopefully it will improve in time.sometimes our bodies throw loads of niggily thinks at us humans and it is easy to lump Them all together and think it must be this that or the other and worry ourselves Silly needlessly.please hang in there, things may seem so much better In a little while.big hugs x

  • Cupi,

    I understand why Jo isn't rejoicing over the clear tests. Had they been positive she would have looked forward to a treatment plan to resolve the symptoms in time. As it is, she still feels crap and doesn't have a plan to resolve her ills.

  • Clutter, surely thyroxine, B12, Iron and Vitamin D replacment IS a ''treatment plan''?

    It just needs a little time to work.............. and possibly tweaking of the thyroid medication at some point.

  • Yenool,

    It IS treatment, but not, I think, what Jo was looking for. Plus the comment from her GP to stop supplementing VitD until it falls to 20, which is deficient, what's that all about?

  • Hi Clutter, oops Misunderstanding - probably didnt make myself terribly clear.Just meant when one has extensive tests to rule in/out possiblility of serious diseases it's a cause for rejoicing when they come back clear. Many are not that lucky.Yes she still has what seems like the thyroid related issues and feels crappy but for that she has had the diagnosis and is on treatment for it.ok it may need tweaking and be a work in progress but on that score it is a positive start IMHO.she can now concentrate on focusing on trying to correct that as best it can be without worrying that there are lots of other health issues going on.

  • Hi Cupi,

    No, I understood you :) Just remembering how I despaired some years ago when I felt dreadfully ill and nothing pointed to any reason why. I wanted a diagnosis desperately because otherwise I was always going to feel that bad. A diagnosis, to my mind, meant that whatever was broke could start to be fixed.

  • No, I don't think you are being fobbed off.

    It looks like your Endo has been quite thorough and ruled out other conditions that could be causing similar symptoms. Leaving the symptoms you have to be being caused by your hypothyroidism only.

    The symptoms you have are all classic hypo symptoms. Whether you have antibodies or not the treatment is the same. Endos are usually only concerned with anti bodies, where they are exceptionally high, which yours are not, as there could be other factors.

    You have only been on Levo for a short while, and it can take many months sometimes over a year to get the balance right and for they symptoms to go or more usually we just become immune to them and get on with things as best we can.

    It looks more to me that you are having difficulties coming to terms with the fact that you have a life long condition. You appear to be looking for answers that are just not there. You would be better off getting a good book on your condition that explains it properly. If you are still having difficulties, then maybe counselling will help you come to terms with it a little better. I had a counsellor myself, and although she was happy that I understood my condition quite well and that it wasnt an issue with me, she did tell me that she does a lot of counselling for people like yourself. It may be worth looking into, but the waiting lists are long on the NHS.

    I do disagree slightly with the yearly checks though. I am of the opinion that 6 monthly should be the minimum, unless there are no other symptoms and a patient has been on a steady dose for at least 2 years. But that is just personal opinion and not specifically aimed at you or your treatment in particular.

    Good luck

  • Hi, thanks for your reply.

    I might look into going private as my Endo does not think I have hypothyroid symptoms.

    I have looked into going for counseling before but I applied for this 3 times in the past and never heard back from anyone. So this has put me off. I also had a difficult experience with a male counselor after I was assaulted and he fired lots of questions at me in a very blunt way. I felt bullied by him.

    Jo xxx

  • Jo don't assume going private will get you any further. You say you think you have hypo and hyper symptoms, well that is what you get with Hashi. If you see a private endo they will probably not do anymore than you have already had done and if they do order more tests they will cost a lot, you may get your GP to do the bloods but you will still have to see the endo for results. Your GP may well not oblige and they don't have to.

    I see a private endo at Spire Bristol, initial cost was £300, then £150 each follow on appt, all the blood tests she wanted would have cost nearly £400 plus the short syn test another £150 and then if you try different meds you will have to pay for them as well.

    You have had a good range of tests done and nothing has been found, be thankful for that, you may well have to just accept that there is nothing else going on, you are just hypo and it will take time.

  • Thanks Hypohen.

    Maybe I'll stick with the GP and Endo for now then.

    Jo xxx

  • Jo, that would be sensible. Most private endos will also be NHS and the treatment of your symptoms is likely to be pretty much the same. Your endo does seem to have been thorough.

    Are you sure you and your partner can't get away for a week or two and camp out with your mum and stepdad? I prescribe you a sunshine break.

  • Hi Clutter, thanks for your prescription. ;)

    The problem at the moment is simply money. Only my partner works and he isn't on a big amount of money. I'm currently looking at last minute flights out to Tenerife and just seeing what comes up.

    Partner will agree to going back out there for a week or two if the flights are cheap enough.

    Jo xxx

You may also like...