Hi :): I am new here, I was classed as having low... - Thyroid UK

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Foxxii profile image
15 Replies

I am new here, I was classed as having low B12 (below 500 by haematologist) in February 2017 and I was started on B12 injections in June 2017. I had my second one in January 2018, they are every 7 months, and I have started to notice that the dizziness and lightheadedness I get upon standing from sitting has resolved. However, I have been getting these other symptoms and I don't know why? I also have underactive thyroid.

Constipation

Low concentration, making mistakes

Pins and needles in feet

Joint aches in elbows, hips and knees

Neck swelling

Tiredness

Heavy/painful periods - I have untreated iron deficiency

Tinnitus

Cold feeling to skin

Nails splitting and flaking

and I was wondering if anyone could give me any ideas please? I was diagnosed hypothyroid in 2013 and I take 50mcg Levothyroxine from 100mcg.

I am really struggling at work at the moment, it is becoming more and more difficult to keep myself 100% well enough to stay in my job.

Thankyou

Serum B12 before supplementing (February 2017) 445 (190 - 900) monitored every 3 months

Serum folate 2.3 (2.5 - 19.5 in December 2017) GP says only slightly under range, no cause for concern, monitored every 3 months

Serum ferritin 21 (30 - 400 in February 2018) GP says only slightly under range, no cause for concern, monitored every 3 months

Vitamin D total 60.2 (50 - 75 suboptimal in December 2017) monitored by GP every 6 months, taking 6000iu from the prescription 800iu originally given.

Serum TSH 4.88 (0.27 - 4.20)

Serum Free T4 14.9 (12.0 - 22.0)

Serum Free T3 3.4 (3.10 - 6.80)

Thyroid peroxidase antibodies 447.5 (<34)

Thyroglobulin antibodies 804.3 (<115)

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Foxxii
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15 Replies
Nanaedake profile image
Nanaedake

Your TSH level is too high for someone who has thyroid disease and is taking levothyroxine. You need a dose increase. Most people don't feel well until TSH is 1 or a little lower. Constipation and neck swelling may be due to undermedication. Why was your dose reduced? Levothyroxine should only be altered by 25mcg at a time unless absolutely necessary for some unusual reason.

I wouldn't be happy with my GP saying that below range folate was no cause for concern. If you have started B12 injections your GP could offer you folic acid supplements. Otherwise you could take a good B complex to raise folate but you need to check with your GP. B12 and folate work together so if one is low it won't be helping you.

I would also be unhappy with below range iron levels and would expect GP to offer ferrous fumerate 3 times a day. See NICE guidelines on iron deficiency anaemia. Ferritin needs to be at least 70 or mid-range for thyroid hormone to function properly. Have you had a full iron panel because if not, your GP needs to do one.

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

The vitamin D Council gives some advice about levels to supplement if your GP cannot prescribe sufficient amounts of vitamin D3. Vitamin D needs is best around 100 or mid-range.

You may wish to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

The importance of vitamins and thyroid function

americannutritionassociatio...

Foxxii profile image
Foxxii in reply toNanaedake

Thankyou my dose was reduced because of

TSH 5.30 (0.2 - 4.2)

Free T4 13.3 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Nanaedake profile image
Nanaedake in reply toFoxxii

That doesn't make any sense.

TSH 5.30 (0.2 - 4.2), Free T4 13.3 (12 - 22), Free T3 4.1 (3.1 - 6.8) These results show undermedication so why would GP reduce your levothyrxoine?

Foxxii profile image
Foxxii in reply toNanaedake

Thankyou it was reduced because I had sweats and was losing weight

Nanaedake profile image
Nanaedake in reply toFoxxii

That can happen with undermedication as well as overmedication. If you are undermedicated then your body tries to compensate and releases cortisol and then adrenalin which can cause you to lose weight and have a rapid heartrate.

Saggyuk profile image
Saggyuk in reply toNanaedake

Iron deficiency will also cause a rapid heartrate, dizzyness, breathlessness and palpitations as well as folate deficiency so agree with Nanaedake and these need to be treated - the ranges are there for a reason? You will now also be very undermedicated with regards to your thyroid as needed increase rather than decrease and 50mcg is a very large drop.

Often the symptoms of deficiencies can become more apparent once starting meds for thyroid as you're effectively trying to speed your body up but doesn't have the basics or nutritional status to be able to do this and as already mentioned, your adrenals will have to kick in more also which will only get worse the more undermedicated and deficient you become.

Many of your symptoms such as tinnitus and coldness and tiredness will be caused by being undermedicated. I always get tinnitus when I'm hypo the rest will likely be deficiencies - just google symptoms of hypothyroid, folate deficiency and iron deficiency.

You should also start looking into why your vit levels are so low (unless you don't eat) - do you have digestive issues etc - nutritional deficiencies and weight loss can also be caused by stomach issues such as coeliacs or gluten sensitivity.

Basically, from the things you're saying about your doctor, I don't think your doc is knowledgeable so i would suggest getting a new one who knows what they are doing.

Hope you get these issues sorted and feel better soon :-)

Saggyuk profile image
Saggyuk in reply toSaggyuk

Sorry just saw your blood count - yes you are definitely still anaemic - you need a new doc as this one is blind and useless x

Foxxii profile image
Foxxii in reply toSaggyuk

Thankyou my diet is usually ok. GP suspects coeliac disease

Saggyuk profile image
Saggyuk in reply toFoxxii

Okay, well you need to be tested then if that's what doc suspects - why haven't they done so already? NHS website states that coeliacs blood test is unreliable so should be referred for biopsy if suspected regardless of result. Biopsy won't rule out non coeliac gluten sensitivity either so even if comes back negative, you should give gluten free a go for three to six months - it has helped many of us here.

The symptoms for iron deficiency are as follows including fatigue, weakness, shortness of breath, rapid heart rate and weight loss and ringing in your ears:

webmd.com/a-to-z-guides/fol...

The symptoms of iron deficiency are as follow including fatigue, weakness, cold hands and feet, dizzyness etc:

mayoclinic.org/diseases-con...

Smptoms of hypothyroidism are as follows including every symptom you mention:

thyroiduk.org.uk/tuk/about_...

I'm hoping you're beginning to see that your doc is doing you no favours I'm afraid :-(

Foxxii profile image
Foxxii in reply toSaggyuk

No idea why they haven't checked me for coeliac before. Will look at links now. Thankyou

Clutter profile image
Clutter

Welcome to the forum, Foxxii.

I deleted my previous post because on re-reading I see you are prescribed Levothyroxine. What do you mean by "I take 50mcg Levothyroxine from 100mcg"? Do you take 50mcg or 100mcg?

Why is your iron deficiency untreated? Doesn't your GP think that's of concern? If you have iron deficiency that will be why ferritin is deficient.

Folate is deficient. Folate works with B12. B12 won't transport without folate so your GP should be concerned and should prescribe 5mg folic acid for a few months to correct deficiency.

VitD is replete >75 and optimal 100 - 150. How long have you been taking 6,000iu?

Foxxii profile image
Foxxii in reply toClutter

Thankyou I take 50mcg levothyroxine from a dose of 100mcg. It was reduced

Iron deficiency untreated since GP will not represcribe me ferrous fumarate after an 8 week trial ended.

Been taking vit D 6000iu since March 2015

Clutter profile image
Clutter in reply toFoxxii

Foxxii,

Well you are undermedicated now so dose needs increasing to 75mcg. Thyroid levels should be checked 6-8 weeks later in case dose needs further adjustment.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.27 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Has iron and full blood count check been done since Ferrous Fumarate prescription stopped?

Foxxii profile image
Foxxii in reply toClutter

Thankyou my complete blood count and iron panel after iron stopped showed

MCV 78.5 (80 - 98)

MCHC 375 (310 - 350)

MCH 28.1 (28 - 32)

Haemoglobin estimation 113 (115 - 150)

Haematocrit 0.41 (0.37 - 0.47)

Platelet count 240 (140 - 900)

RBC count 4.43 (3.80 - 5.80)

WBC count 4.10 (4.00 - 11.00)

Iron 7.2 (6.0 - 26.0)

Transferrin saturation 13 (12 - 45)

Clutter profile image
Clutter in reply toFoxxii

Foxxii,

You are still anaemic. Your GP is wrong not to continue prescribing Ferrous Fumarate. It can take months of taking iron tocorrect iron and ferritin deficiency. See another GP if your GP won't prescribe iron and folic acid and complain to the practice manager.

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