Problems with cold spots all over body and hypo... - Thyroid UK

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Problems with cold spots all over body and hypothyroidism

Stephanie8600 profile image

Hi my name is Stephanie and I’m 34 years old I recently had a baby last July my body started shifting after the pregnancy then I decided to go in cause I had a throat infection and they did a full on panel and found out my tsh levels where high they told me if it doesn’t go lower by next year that they would have to put me on meds for it so now we are in January starting feeling cold spots all over my body face head arms legs and toes and feet and inside my ears not knowing what was going on having burning skin on lips and face then they checked me once again and my tsh levels was even higher then after the new year so they put me on levothyroxine on was on 25mg it was working at first but then my body starting rejecting where my face would feel numb and heavy then it was be hard to walk or even move I didn’t like the side effects so I stayed on the cold spots went away for a while and once I felt my body changing in may the cold spots gotten worse and i felt pins and needles along with it and itching a lot and I talked to my doctor telling them hey my body feels very werid so they ended up putting me on 50mg bad mistake my body felt even worse like I had pins and needles unable to move my legs and hands nausea vomiting and very dizzy I was on them for like a week and I felt like I would lose my breath fast so I ask them why I kept feeling this way so they put me back down to 25mg and I’m still having the same problem and I’m on the name brand medication I don’t know what’s wrong I’m very scared worried if This will ever go away at time I wish I could get off the pills but then I don’t want to end up having a racing heart I have anxiety as well and this medication is not even worth it to be having clammy hands and lips and having the cold spots all over and pins and needles what do I do please help

I also shake and feel dizzy and blurred vision along with all the symptoms I have please help need someone to help me on what I need to do to get better

18 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask Doctor to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s

About 90% of all primary hypothyroidism in Uk and USA is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Standard starter dose of levothyroxine is 50mcg

Dose is increased slowly upwards in 25mcg steps until TSH is always under 2

Try different brands of levothyroxine

But where is the cold spots coming from that’s causing me to have burning symptoms and pins and needles but I’m not even sure what type of hypothyroidism I even have and I did get tested recently and they told me I have to wait until September do you think I should see a specialist to do more test and have you ever had cold spots before and feeling dizzy and tired

SlowDragon profile image
SlowDragonAdministrator in reply to Stephanie8600

Get vitamin D, folate, ferritin and B12 tested

Plus coeliac blood test

And test thyroid antibodies

I can try to ask the doctor but my vitamin d was not really low the last time they checked me and my b12 as well but is that what’s causing me to have the cold spots and the burning you said coeliac test and how you had this before

I was reading my chart back in February and yes my vitamin d levels are low but my b12 isn’t low and they are over looking it I just want them to refer me out to a specialist cause it’s like they aren’t listening to me at all someone who specializes in the thyroid to see what kind of thyroid problem I have

SlowDragon profile image
SlowDragonAdministrator in reply to Stephanie8600

Please add actual results and ranges on vitamin D, folate ferritin and B12

What vitamin supplements are you currently taking

If you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

Most leading Hashimoto’s thyroid specialists are in USA

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask doctor for coeliac blood test first or buy test online, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

All these links are USA based medics

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Recommend reading Thyroid Pharmacist, Chris Kresser, Hypothyroid Mom and Stop this Thyroid madness ….

I have eliminated gluten from my diet and I’m still getting the same cold spot and pins and needles all over my body the only thing that I could do at this point is see a specialist that’s the only way they could fix my problem have you ever felt this way before wanting to get better and can’t

SlowDragon profile image
SlowDragonAdministrator in reply to Stephanie8600

How to find a doctor

stopthethyroidmadness.com/h...

SlowDragon profile image
SlowDragonAdministrator

Spots could suggest gluten intolerance, very common when hypothyroid

Pins and needles is frequently linked to low B vitamins especially B12 again extremely common when hypothyroid

After having a baby progesterone levels drop which can lead to all sorts of problems including hashimotos natural progesterone cream can be beneficial you could do your own research about progesterone cream if you decide to buy some online make sure it has progesterone usp in the ingredients if all these problems happened after giving birth the problem is probably hormonal

I had my daughter back in July it’s almost been over a year is there a way my body could go back or do I have to be on the pills for the rest of my life

they didn't put you on pills straight away because your body should go back to normal the ovaries will make more progesterone which will balance your hormones but it can take time

They ended up putting me on them after the beginning of the year

imo they should wait for the body to go back to normal but I'm not a doctor - don't do anything drastic like suddenly stop your levo

Stephanie,

Welcome to our forum,

Cold spots are a sign of inadequate thyroid hormone. Before I was adequately medicated cold draughts that nobody else noticed were always felt by myself and made my body literally hurt. Even submerged in a hot bath didn’t offer comfort as cold spots somehow always remained cold.

Pregnancy & postpartum can destabilise thyroid function. It sounds like you have postpartum thyroiditis with a lot of thyroid antibodies given the reaction your body is giving out, where levels may elevate, plummet & restabilise only to repeat the whole cycle again, and again.

Postpartum thyroiditis can start anytime during the first year after delivery. The condition may reverse even with elevated thyroid antibodies as it is a reaction to hormonal flux & changes to the immune system post pregnancy, so slightly different to the normal course Hashi/Graves takes.

However, it is important to get both sets of thyroid antibodies tested because should the condition continue Hashi can mimic Graves for a time and there has been previous members diagnosed with Hashi only to actually have Graves and vice versa.

Anxiety is common with thyroid issues ands can be helped by supporting adrenal function. It is also important to have iron, Vit B12, folate & Vit D tested.

It must be awful feeling like this when you should be enjoying your (nearly) 1 year old 🤗

Stephanie8600 profile image
Stephanie8600 in reply to radd

Yes it’s very stressful it’s just the doctors are not understanding what I go through everyday is postpartum thyroid reversible or is it permanent

No I’m not going to do that until my doctors approval but seeing a specialist is better

Stephanie8600,

As already said it can go both ways.

However, taking SlowDragons recommendations on going gluten free and ensuring optimal iron & nutrients will help reduce yours body's reaction and calm adrenal response.

Also supporting adrenal glands that are supplying all these stress hormones making you feel rubbish.

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