Sickle Cell Society
1,488 members361 posts

Really feel confused

I'm new on this forum I just don't know what to ask now !! This sickle cell trait I've got I have been suffering for quite a long time now some days I get my crisis the pains in my stomach legs feel weird but my GP don't listen she thinks I'm mad or on drink or even drugs !!!!!! So where do I get some questions answered this is no BS it's real & I've heard others suffering with the GP fobbing patients off because they don't know a great deal about it which more should be done I think more reseche in the sickle cell trait patciants to under stand us

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Sorry to hear your story. I have had similar problems with the GPS telling me iam nuts it's all in my head. I had to max my credit cards out to go private in London to a brilliant hematologist who was incredibly helpful. I will be paying the money back for ages which should not have to be the case to get answers for your health but I had no other choice. Even if you can have a consultation with a good specialist that is up on current findings that can write a letter to your gp making them aware they are in the wrong and you need to be treated.

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Hi, what borough do you live in if you live in the U.K.?

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Unfortunately what you are suffering is common regardless of whether you have trait or not.

What you need to ask your GP to do is these tests:

- vitamin D

- vitamin B12

- Folate

- Ferritin

- TSH

- Free T4

- HB1AC

- Full blood count

The reason for this is while you have sickle cell trait you can have other issues which make it worse and you need to have to tests to rule it out.

You need to insist on having all these tests not just a full blood count as many GPs fob patients off and only do a full blood count.

When you have the blood test ensure you have it first thing in the morning and fasting over night - you can drink water.

Once you have the tests and get the results, ask the receptionist for a copy of them within 7 days. Say it is for your own records. If s/he is difficult state clearly it is your right to have them under the Data Protection Act 1998 and you will report the practice to the Information Commissioner if s/he refuses to comply. (You should be able to see the results online, alternatively you may have to provide your name and address with ID to get a printed copy.)

The reason you want the result is sometimes people are on the borderline of being low in something or are actually low but the GP who reviews the results tells people they are fine. Plus once you get a copy you can then see if you need to go and see a specialist privately otherwise you can find the specialist may do one or some of these tests and it will be very expensive.

If your GP adamantly refuses to do the tests you can get them done privately.

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