advice on bloods please

the following were done 6 weeks ago. and gp wanted to reduce my levo from 100 to 75 daily. I refused to reduce the dose. I dont have hyper symptoms, but have been hypo for 20 years , I have been just struggling along, not making a fuss, yearly bloods etc.

TSH LO 0.17 ( range 0.35-6.00) this was the only one done! no T4 , T3 etc!

FBC.

MVC rising ? check B12 / folate/ ?/ ETOH

RBCs LO 3.92 ( range 4.10- 5.10)

MVC HI 101.00 (range 80.0 - 100.0)

EGFR

serum cretinine 65 (range 50-90) normal kidney if ...

when i seen him last week he refused to do b12 etc and would only repeat TSH so the results from last week are as follows. He said the lab would not allow T4 /T3 etc and if i wanted them done i would have to go private.

TSH 0.08 (range 0.35-6.00)

T4 14 (no range given) told by receptionist gp had marked results NO ACTION.! still feel so tired, etc etc.

The more i read about the thyroid the more confused i get, if i have bloods done by blue H will this give me a ? diagnosis of what type of hypo i have?

I am also trying to wean myself off the antidepressants, as the dentist diagnosed DRY MOUTH with reduced saliva output. (cause of sore throat, sore mouth, swollen tongue, difficulty swallowing etc..) he said it was a side effect of the antidepressants.....why did i go to the dentist? because the gp never once looked in my gob!

someone wrote the fable about 2 little frogs and i feel like the one who lies down, cause i am just so fed up going round in circles like so many of you.

Mary

ps i probabley didnt write this on the correct page, but there i go.....

20 Replies

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  • Hi mary

    I am not very good on blood results so I have to let somebody else help with that. I think however that you have to insist having B12, D3 , iron tested as this is the minimum I think a Gp has the responsibility to monitor. Having been hypo for 20 years ( I have been hypo for 35) I know how you feel and there is a strong possibility that you also have a cortisol problem. I would also like to ask you if you have dry eyes and this often goes together with dry mouth. Dry mouth when you take antidepressants most often goes away after a while so if you have been on antidepressants for a while it is probably not the reason.

    Roslinxx

  • Hi roslin, i have had the sore mouth on and off for 3 years and the dry eyes for a lot longer, I didnt really think it was the antidepressants as i have been on and off them for 20 years. the reason why i am coming off the anti ds is to try and prove its not them. thanks for replying.

  • hi Mary

    It sounds like you should check out if you have a degree of Sjogrens syndrome

    bssa.uk.net/pdfs/informatio...

    There seem to be a strong link btwn hypothyroidism and sjogrens and many people on this forum has it. There are so many condition with similar symptoms to being hypo, and difficult to sort out. It sounds to me that you have to change your GP if you are going to get the care you need.

    Good luck

    Roslinxx

  • I've used blue horizon for blood tests - found them very good

    bluehorizonmedicals.co.uk/s...

  • thanks clarence that sounds positive. will give them a go.

    mary

  • TSH at 0.08 is a bit low especially if you have symptoms.

    A hyper TSH reading doesn't mean you have hyper symptoms, the most likely symptoms are very much hypo, tiredness being the worst.

    I have just been in this situation myself with a TSH of 0.09. I was so tired I could have fallen asleep standing up, I was breathless and had headaches, I reduced my dose from 112.5 mcg to 100mcg and within a week symptoms have gone, it's worth considering trying a reduced dose.

  • Hi hypohen , this is where i get confused, if TSH was 0.17 and gp wanted me to reduce levo which i didnt do. and now its at 0.08 he says no action is this what is called supressed TSH?

    thanks mary

  • Your MCV and RBC are out of range, you need to insist on B12 and folate tests. Glossitis (sore swollen tongue) is a symptom of these 2 deficiencies.

    Here is an explanation of the MCV and RBC from labtestsonline:

    Mean corpuscular volume (MCV) is a measurement of the average size of your RBCs. The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anaemia caused by vitamin B12 deficiency or folic acid deficiency.

    A low RBC count may indicate anaemia, bleeding, kidney disease, bone marrow failure (for instance, from radiation or a tumour), malnutrition, or other causes. A low count may also indicate nutritional deficiencies of iron, folate and vitamin B12.

    Your GP is being extremely negligent by not following up on these lab results, it's bad enough when they send us away at the bottom/top of the range, but when you're outside the range that is outrageous. Can you bring someone with you and insist on the tests? Can you see someone else at the practice? Make sure you show him your tongue and mention glossitis. Here is some more info to convince him, taken from Patient UK so he can't really ignore it:

    patient.co.uk/doctor/Pernic...

    patient.co.uk/doctor/folate...

    And just for reference here is the PA Society symptom checklist:

    pernicious-anaemia-society....

    Obviously very similar to hypo, but commonly found together.

    I'm not hypo so I can't really advise on that side of things, but I would say that from reading this forum a T4 of 14 is on the low side for someone on thyroid medication?

    Believe that you're the frog that waits for the butter, because you're still here, asking questions and looking for answers.

    Hampster x

  • Hi Hampster, thank you for all that information, you explained it well, I will definatley take my husband with me next time as I came out in tears last time, he does treat us differently.

    The info on the PA is quite frightening , having just read it ......thank you for it. it all seems to be fitting into place, especially as i also have gastric problems recently and nerve damage to fingers and toes. i need to get my courage up to go back, as it is the most daunting thing in the world for me.... going to the gp surgery.

    Mary

  • I really empathise with you Mary. I too have had an experience where I left the GP's surgery in tears, they were insisting it was all my thyroid when I knew it wasn't (I have Graves and B12/folate def). It's always worth gently reminding them that just because you have one medical condition it doesn't mean that you can't have others, and sadly in the case of the thyroid you are actually more likely to have others. I'm lucky to see an Endo privately and he ran some tests for me, and when I went back to the GP I made sure I saw a different person - he has been brilliant. So you can turn these situations around, remember it's your health at stake here, not theirs.

    If they do agree to test you make sure you get a copy of the results, because low normal is most definitely not optimal. If they don't agree you may need to consider the private testing route, here is a useful link:

    thyroiduk.org.uk/tuk/testin...

    Lots of people resort to self supplementing when they get nowhere with their GP's. It's an option, but I would try and get a diagnosis first before taking any supplements (which will skew the result), particularly in your case as you haven't even been tested.

    Looking at your thyroid results again, your TSH may be low but your T4 isn't that high so your GP trying to medicate you based on the TSH alone is wrong. Read this link, particularly from about half way down when it mentions Dr Toft's book:

    thyroiduk.org.uk/tuk/diagno...

    One thing to bear in mind is that if you do turn out to be B12 def and you get the proper treatment, it increases the efficacy of thyroid meds and most people end up reducing their dose.

    Let us know how it goes, if you need any more B12 info the best place to start is here:

    Websites:

    b12d.org/

    pernicious-anaemia-society....

    Books:

    Could It Be B12? (Sally Pacholok & Jeffrey Stuart)

    Pernicious Anaemia: The Forgotton Disease (Martyn Hooper)

    H x

  • thank you hampster for taking the time to reply, for the encouragement and the advice, it is very clear and specially the net links and book . I have made a note and will do something positive now. .

    mary

  • That's OK, if it weren't for forums like this I'd be a quivering wreck in the corner! Just noticed your post below, Hashi's and PA sufferers often have LOW stomach acid, not high, symptoms are similar. The doctor merrily dispenses Proton Pump Inhibitors (PPI's) like Opramezole as though they were sweeties, without bothering to do any tests, blissfully ignorant to the fact that it will make a low stomach acid problem worse, and to really put the knife in further, PPI's actually interfere with the absorption of B12 in the stomach! What reaction did you have to it?

    There is lots of talk about this on the PA Society forum, you can read the forum without being a member. Just go in and type "Opramezole" in the search box. Or you can google "PPI & B12".

    Honestly, I can't begin to tell you...it annoys me so much.

    Scenario 1:

    Patient: Doctor, I've got indigestion / heartburn, what could it be?

    Doctor: Well clearly you have high stomach acid, I can tell this even though I've done no tests on you. Here, have some narcotic drugs that cost a fortune. Goodbye.

    Scenario 2:

    Patient: Doctor, I have all the symptoms of a B12 deficiency, including indication in my last set of blood tests that I have some haemotological abnormalities.

    Doctor: Don't be ridiculous, I'm not going to consider treating you until you're almost out of B12 stores with irreversible neuro damage. I really can't trial you on a completely safe non-toxic vitamin supplement that costs pennies...

    Ggggrrrrrr

    H x

  • Hi Mary,

    Sorry to hear you've not been feeling good recently.

    You say you've been hypothyroid for 20 years. How long have you been taking 100mcg levothyroxine? And has your TSH been low before or is this new?

    Apart from feeling tired, how are you? Do you still suffer from depression? Do you have any symptoms of hypothyroidism such as feeling cold, dry skin or hair loss?

    >When I saw him last week he refused to do b12 etc...

    That's strange. I think you should see a different GP at the practice, assuming there is one. The lab even suggested measuring B12 and folate, since deficiency of these vitamins is a common cause of raised MCV. Excessive alcohol consumption is another common cause.

    >I am also trying to wean myself off the antidepressants, as the dentist diagnosed DRY MOUTH....

    Some antidepressants cause dry mouth, others do not. Which antidepressant do you take? Amitriptyline probably causes more dry mouth than any other commonly prescribed antidepressant, closely followed by dosulepin. Dry mouth is bad for your teeth because it leads to poor oral hygiene. There are various sprays available to provide temporary symptom relief.

    Bob

  • Hi bob thanks for your reply,

    this is the 1st time in 20yrs that there has been a reading "outside of normal limits". I have multiple symptoms all the time, tiredness, freezing cold, and sometimes over heating (post menapause , hot flashes!!) weight gain, confusion, mental fog which is very bad, hair loss, dry eyes, mouth , skin, the other gp told me it was my age to quote her " everything starts to dry up at your age". I do like a whiskey occassionally maybe 3 or 4 per week. some weeks nothing.

    mary

  • Hi Mary,

    Which antidepressant do you take? This could be very relevant. Dry mouth, dry eyes, weight gain and fatigue can be caused by certain antidepressants, but not all. Do you take any other medication, and do you have any other medical problems?

    >post menapause, flashes!!

    Have you recently gone through the menopause? Hot flushes are certainly common, other changes (for example to the skin) occur more gradually.

    >I do like a whiskey occassionally maybe 3 or 4 per week. some weeks nothing.

    That would not account for your raised MCV. Testing B12 and folate levels is recommended. Even with mild B12 deficiency and in the absence of anaemia, fatigue, depression and poor memory have been reported so it's well worth getting tested.

    Bob

  • Hi Bob,

    i take levo thyroid 100 , fluoxitine 20mg and carboner drops for dry eyes , paracetamol for joint pains, ( i have been cutting down on flueoxitine over last 2 months and pain is returning to all of my joints again)

    I stopped omaprazol due to reaction which was given for "heartburn diagnosis " when i visited gp with stomach pains.,so take rennies when needed, thats it.

    The stomach problems are recent 6 months or so.

    * had hysterectomy 6 yrs ago aged 55

    * "over heating problems" since my early 40's.

    * profoundly deaf due to virus aged 34, nerve damage.

    *had cochlear implant 2 years ago.

    * spinal stenosis for 30 years nerve damage to toes etc

    *very frequent UTI's

    sorry you did ask.....

    does anything jump out at you? if i dont get up courage to go back to gp i will have tests done through blue horizon i think.

    thanks for taking the time to reply and advise.

    mary

  • >does anything jump out at you?

    Amongst the antidepressants, fluoxetine is not a major cause of dry mouth, or dry eyes. Severe dry mouth is very unlikely with this medication. I think it's worth looking for other causes such as Sjogren's syndrome. Sjogren's syndrome causes dry mouth, dry eyes and often fatigue and joint pains. It is more common in patients with thyroid disease, and in patients who have rheumatoid arthritis.

    Initial blood tests to help with the diagnosis include Rheumatoid Factor (which is almost always positive in Sjogren's, but is also positive in certain other conditions) and Anti-nuclear antibodies (ANA). If ANA is positive, other antibodies called SSA and SSB can be tested - these are more specific to Sjogren's. Dry mouth and dry eyes can be treated with an increasingly wide array of products. The eyes drops Oxyal and Hylo-Tear are said to be especially effective, for example. A tablet called pilocarpine (Salagen) can be effective but it often causes side effects so it's not used first-line. Another tablet called hydroxychloroquine is sometimes used for joint pain in Sjogren's.

    >if TSH was 0.17 and gp wanted me to reduce levo which i didnt do. and now its at 0.08 he says no action

    I expect he was less concerned about your low TSH when he saw that your free T4 was within the normal range.

    >had hysterectomy 6 yrs ago aged 55

    Did you ever take HRT, and if so did you benefit? I suppose it's a bit late to start now if you've never used HRT before. HRT tends to be simpler in those who've had a hysterectomy because there isn't any concern about endometrial overgrowth. Oestrogen only treatment can therefore be used. Skin patches or gels containing the human oestrogen 'estradiol' are probably the most natural form of replacement (eg Estradot, Evorel, Oestrogel and Sandrena).

    > spinal stenosis for 30 years nerve damage to toes etc

    Have you noticed any new neurological changes recently? Vit B12 deficiency can cause tingling or numbness in the extremities. Even if do get tested and are found to be deficient. Treatment is simple with hydroxocobalamin injection. A course of injections is given (usually 6 times in 2 weeks) followed by one injection every 3 months. The doctor would also need to check for the underlying cause of deficiency and treat that as appropriate.

    Folate deficiency is simply treated with folic acid 5mg tablets. Where both deficiencies occur together, is is important to correct the B12 deficiency first.

    >*very frequent UTI's

    Do you take any preventive medications such as trimethoprim or nitrofurantoin? Trimethoprim may increase folate requirements. Some women find daily cranberry juice helpful, it's always worth a try.

    Anyway, hope you have the confidence to see a different doctor.

    Bob

  • thank you Bob that is very informative and does start to make sense,

    I have never had HRT,

    but do have numbness in 2 fingers on left hand, which gp said was possible trapped nerve,!

    all the information is starting to come together.

    I call the surgery for a repeat prescription when symptoms start, finished course of trimethoprim a week ago and passing blood today, so just got px for nitrofurantoin, also gp requested specimen this time.

    thank you again for letting me get it all off my chest.

    Mary

  • Hi Mary,

    >but do have numbness in 2 fingers on left hand, which gp said was possible trapped nerve!

    That seems likely. Numbness in the little finger and ring finger commonly occurs when the ulnar nerve is compressed at the wrist, or sometimes the elbow.

    Numbness of the thumb, index finger, middle finger and one side of the ring finger occurs when the median nerve gets compressed or 'trapped' at the wrist. This is called carpal tunnel syndrome. It is very common and often worse at night. There seems to be an association with hypothyroidism, but there are also many other associated conditions.

    Neurological symptoms of vitamin B12 deficiency would generally be more severe and widespread.

    >I call the surgery for a repeat prescription when symptoms start, finished course of trimethoprim a week ago and passing blood today, so just got px for nitrofurantoin, also gp requested a specimen this time.

    Antibiotic resistance amongst urinary tract bacteria is getting worse and worse and worse... not just in the UK but all over the world. Because of this, taking diagnostic specimens for culture and antibiotic sensitivity testing is increasingly important. Your GP has done the right thing. The sample will reveal whether nitrofurantoin is a suitable treatment for your cystitis.

    Prolonged use of very high doses of trimethoprim occasionally increases MCV but if you've only taken it intermittently this does not seem a likely cause.

    What is your diet like? Folate deficiency tends to occur in people who are not eating very much. B12 deficiency, on the other hand, is usually caused by impaired ability to absorb the vitamin due to underlying problems with the stomach or intestine. An exception is strict vegetarians or vegans who do not supplement. Vitamin B12 is found in animal products.

    Your MCV is only borderline abnormal at 101. It is not definitely the problem.... but since you've been feeling unwell lately it should certainly be looked into.

    Bob.

  • Hi Bob,

    it is the little finger and ring finger that are having problems, definatley not severe as i can still use them, just get a bit clumsy at times, thank you for the reassurance.

    UTI's started after the hysterectomy, so fairly recent.

    Diet is fairly decent, mostly cooked from scratch. very lean meats / fish, nothing fried, lots of fruit and vege , but do have a weakness for chocolate /biscuits.

    I do have a problem digesting bananas and eggs such chronic indigestion and stomach cramps that lasts for hours, so i give them a miss.

    thank you Bob your help has been invaluable and very calming,

    Mary

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