"General malaise, hypothyroidism and Levothyroxine."

About: Manchester Royal Eye Hospital / Ophthalmology Salford PCT

(as the patient),

This missive is a rather long “poor me” whinge, but from what I have read, I am not alone in being dissatisfied with Levothyroxine. I won’t bore you with the full list of health problems I have had but have included several which may, with hindsight, be relevant.

Until puberty I had been underweight and frequently visited the family doctor regarding this and various other ailments. Then my weight yo-yoed throughout my teens and twenties, as did mood and vitality. At 27, I was prescribed Danol (as I had very heavy and frequent periods) and I gained two stone, as well as facial hair growth and an uncontrollable temper.

After six months I got the GP to let me come off Danol and the menstrual problems reasserted themselves but the weight and facial hair remained. Eventually, having gained another stone, I underwent a hysterectomy and then gained more weight. Needless to say I got abuse from family and “boyfriends” about my being fat and having let myself go. By this time I was 36 and looking after my mother, who had dementia, with no support from family or NHS. Needless to say, my life was very active but I still continued to gained weight.

After my mother’s death I remained active, even after I had permanently damaged my foot and had the onset of arthritis, however, inevitably I continued to gain weight. Over the years I had discussed my weight gain with various GPs and was always told to pull myself together and get dieting. In fact diets had never worked, after losing a few pounds I would gain it back with interest.

In 2006 I developed a persistent cough but again this was dismissed by GPs. In 2008, at 51, I had my first mammogram and I was diagnosed with breast cancer and underwent bilateral mastectomies and spent the next year in and out of hospital for breast reconstruction.

The cough persisted throughout and my (then) landlord insisted I try my GP. After blood tests there seemed to be problems with my liver and kidneys and I was referred to a renal clinic. The GP then decided on further blood tests and I was quickly informed that I had a serious problem with hypothyroidism (TSH at over 100 and T4 of 2) and that I needed medication straight away as my levels were life threatening. This GP said that Levothyroxine would put paid to my weight problems and I would feel much more energetic.

Although unable to gauge how long I had been suffering with hypothyroidism, when it was diagnosed, the practice nurse stated I must have been suffering with it for many years as my body was coping and the way I felt had become “normal” for me, although it was obviously anything but normal for good health. The reasoning being if my thyroid levels had dropped suddenly to the low T4 and high TSH the condition would probably have been picked up sooner.

Shortly after the diagnosis I moved district and registered with my current GP who has taken the view that I have only had hypothyroidism since 2009 when I was first prescribed Levothyroxine.

The renal clinic never found anything wrong and no investigations were made into the liver problems. Sadly since this I have gained another three stone and constantly feel exhausted and I sleep so much longer than one might think necessary. I know I eat too much but the hunger is ridiculous.

I never used to be like this until I started taking Levothyroxine. I have been to my current GP many times pleading for help, asking to see a thyroid specialist or have my medication changed or stopped. Unfortunately for me, my GP, who also has a thyroid condition herself, takes Levothyroxine, is tall and very, very slim and sees the problem as my fault entirely. She tells me my blood results are fine (although my requests for a hard copy of the results were withheld for a year) and so she states I am fine and properly supervised so I do not need to see a specialist, i.e. Levothyroxine works for her so it works for everyone.

The fact that I tell my GP that I cannot stop the weight gain, I feel awful and, strangely, I am always very hungry (which cannot be normal) I am told there is no alternative to Levothyroxine and that I need to get some willpower to deal with the hunger and go to the gym (but even mild exercise, exertion or mild weather has me “sweating like a pig” – hair and clothes drenched, which is very embarrassing and also I end up with sores where the wet skin causes friction. The GP can do nothing about these problems and simply offers anti-depressants – this being the surgery standard answer to most ailments.

I have asked for help regarding the excessive sweating and was referred to a dermatologist. She stated I had hyperhydrosis and I could undergo an operation to deal with my underarm sweating. When I asked whether this was likely to help with the sweating from my scalp, face, neck, shoulders, back, chest, groin, legs and feet she told me not to be stupid and then discharged me from clinic back to the GP stating I had refused treatment. I have also been unable to get anywhere with the GP regarding my skin being very itchy.

I also presented to the GP with throat problems. I feel as though I have something stuck in my throat, which often makes me cough, and it often feels swollen but is not sore as well as a constant nasal mucous. My thoughts were that this was probably something to do with the thyroid but the GP dismissed this as nonsense and I was sent to the local ENT. They noted that I had a definitely swollen throat with mucous production but no sign of infection. So I was prescribed a steroid nasal spray and discharged from clinic. Things have not improved.

Various GP surgeries have put me through diets (which never work) and have checked me for diabetes with negative results. I was very angry when the nurse at the current surgery told me to stop eating chips and pizza. I have only eaten chips twice in the last three years and haven’t had a pizza in more than four years. They also tell me to stop smoking even though I have never smoked in my life.

Another oddity is that I am now craving salt as well as sweet foods. I can get past the sweet craving by eating fruit but until recently I have never used salt. Now I add salt liberally to food. I’m sure this cannot be right. I have brought the problem up with the GP surgery but they have no explanation other than it’s my imagination.

For years I have suffered with dry, gritty eyes and was always instructed to use wetting agent throughout the day. However, about four years ago I had been told that I had vascularisation of the eyes and could no longer wear contact lens. Now I have developed further problems with my eyesight and have been seen by the Manchester Royal Eye Hospital and there was suggestion with the assessment clinic that besides cataracts, there is a good possibility that the thyroid problems have now affected my eyesight but when I was seen by the PCT clinic, the doctor stated I did not have thyroid eye disease and did not need to “bother” their thyroid specialist.

The doctor at the PCT clinic asserted that a new lens prescription would help but the Optometrist stated the eye tests showed the current prescription is as good as I will get and the problems need a full diagnosis. I was told I would have another appointment with the PCT clinic at the hospital and so I waited for this. After several weeks I telephoned the hospital to find my notes had been sent to Medical Records and not put forward for another appointment. Thankfully the secretary for the consultant who is overseeing my case retrieved my notes and showed the consultant who instructed the PCT clinic to offer another appointment. Some time later the consultant’s secretary telephoned me and told me the PCT clinic had arranged for an Orthoptist appointment. I am currently awaiting to attend this.

I feel I have reached stalemate with the GP as, since starting to take Levothyroxine in 2008, things have gone from bad to worse. I am currently on 150 mcg Levothyroxine and the GP says that I am slightly over medicated but when they dropped the dosage to 125mcg I have been under medicated. If there were another GP within the area I would change in the hope of getting to see a specialist but we only have the one practice. Again my blood tests have shown liver problems, on re-test show a worsening of function and I am no instructed to have further blood tests in a few weeks time.

I have had several blood tests recently, as it has been noticed that my liver function is not so good. According to my GP my bloods for TSH and T4 are “normal”, but the last blood test I also got the GP to check my T3, this also was “normal”, as were the various extras, such as Vit B12 and ferritin.

The GPs reaction to this was that I needed further bloods done for Hepatitis and HIV. I said I had had HIV done over nine years previously and had not had any physical contact with anyone, other than for medical reasons, since then. Still I was pushed until I agreed to allow that test to be done. I am sure that this will now show on all my medical records and will be picked up when I allow outsiders, i.e. prospective employers, to view my medical history. I am currently waiting for the results of these to come back.

She asked if I had undergone any surgery or blood transfusions! Why did I bother informing the GP surgery of the hysterectomy, bilateral mastectomies, the surgical change from tissue expanders to implants the nipple reconstruction prior to registering with the surgery and then undergoing a further exchange of implants due to capsular contraction a few months after my registration with them? Obviously looking at a patients notes does not come into play with this GP. Why do I seem surprised?

They also tried to send me for mammograms and when I did not attend (having contacted the screening clinic with the “news” that I had already had bilateral mastectomies) the GP records show me as DNA for that appointment. When my GP found that I had persuaded her colleague to refer me to Manchester Royal Eye Hospital (which is reasonably near my home and quite easy to get to) she was not pleased as she felt I should have been referred to the Salford clinic, which is actually somewhere in Bolton and quite a journey away.

I posted these results on a thyroid support website – reaction to the results is that it is no wonder I feel very unwell, I am borderline (low end) on everything tested. So my T4 and T3 are low, as is B12, ferritin, etc. , but the GP does not care.

Here I am 56, weighing in at well over 17 stone, constantly hungry, losing my vision, irritable and pretty miserable. I am at my wit’s end and have no idea where to turn. Levothyroxine obviously does not suit me but I am unable to persuade the GP to allow me to see any specialist. Again, were I given the option I would want to be seen by Manchester Royal Infirmary and not Salford Royal, but if the GP ever relents, I will be given no choice.

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Responses

Response from Eve Koutidou, Patient Experience & Quality Project Officer , Patient Experience & Quality, Patient Partnership Department, Central Manchester University Hospitals NHS Foundation Trust

Dear Ms Postlethwaite

The Manchester Royal Eye Hospital (MREH) was very sorry to receive your comments and concerns via the NHS choices website, following your appointments at the hospital.

We are concerned about some of the points you have raised, however it is very difficult to respond to the specific concerns you have raised without being able to investigate in detail and the MREH would like to have the opportunity to investigate your specific concerns in detail and provide reassurance. The MREH takes all issues surrounding patient care very seriously.

If you want to raise this issue please contact our Patient Advice and Liaison Service on 0161 276 8686 or by e-mailing pals@cmft.nhs.uk and they will pass your concerns onto the MREH.

Eve Koutidou

Patient Experience & Quality Project Officer

Central Manchester University Hospitals, NHS Foundation Trust

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Update posted by postlethwaite (the patient)

It's rather unfortunate that the Manchester Royal Eye Hospital feels I have singled them out. The complaint is really more to do with the poor diagnosis and treatment of thyroid patients by GPs and their blocking access to specialists. In fact my GP is now angry that Iam being seen by MREH and not at Salford Royal's eye service at Bolton