Desperate for Feedback on Heavy Head Feeling - Thyroid UK

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Desperate for Feedback on Heavy Head Feeling

thyroidrose profile image
11 Replies

To All,

I had hyper after the birth of my son in 2013 and now have hypo/hashi's that I am SLOWLY working my way towards treating. I take 75 mcgs of Tirosint every day. While I realize this dosage is somewhat low, I am desperately looking for feedback on my worst symptom which is my head.

When I lean forward it feels like it weighs 100 lbs, so trying to play Legos with my 4 year old is torture. When I am trying to talk to someone I am so woozy that I can barely focus my eyes on their face without feeling the dreaded "internal flipflopping." And when I try to do any sort of exercise like brisk walking the wooziness is just off the charts so I stick with low impact workouts such as yoga and anything I can do lying on the floor.

At last check:

TSH 2.830 (range 0.450-4.500)

FT4 1.27 (range 0.82-1.77)

My endo will not order T3 or FT3 (a reason why I am switching doctors)

Ferritin 88

Vit B12 714 (range 211-946)

Folate >20 (range >3 normal)

Vit D Hydroxy 60 (normal - no range given)

Vit D 2 Hydroxy 3 (normal - no range given)

Vit D 3 Hydroxy 57 (normal - no range given)

I was seeing an endo who as mentioned above was awful so I have an appointment to see a holistic MD next month.

I know our symptoms are all different, for instance I have not gained any weight as many others have. But I am terrified that I have another ailment other than hypothyroidism and I am barking up the wrong tree to get relief! I don't see many people mentioning a heavy head as their main symptom so this has me concerned.

Can anyone either explain this symptom to me - is this a type of fatigue? This is not like the 2-3 pm crash I was having before I started Tirosint, this is different.

Or can someone who maybe has been where I am come forward and let me know that after their levels got to a good place this sensation went away?

At the moment I am feeling a bit doomed and am desperate for feedback, so thank you in advance.

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thyroidrose
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shaws profile image
shawsAdministrator

Welcome to our forum, and today we've had a posting of the Thyroid Pharmacist's free to listen to episodes and think you will learn a lot from this. It expires in 13 hours.

thethyroidsecret.com/specia...

First, your TSH is too high. The aim, for us the patients, is a TSH of 1 or below. Most doctors think that 'anywhere' in the range is fine. No it isn't. So you have to request an increase in dose.

Your Free T3 might be too low. T3 is the only active thyroid hormone and it needed in our billions of T3 receptor cells. T4 is inactive and has to convert to T3. If you could get a FT3 test and post results with the ranges members will respond.

All blood tests for thyroid have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours from your last dose and the test and take dose afterwards.

When hypothyroid and we exercise if not on an optimum dose, exercise reduces our T3 and we don't feel so good. T3 is the 'energy' if you like for our whole body.

This is a link which may be helpful and any member who has had a similar experience to you will respond.

medhelp.org/posts/Thyroid-D...

thyroidrose profile image
thyroidrose in reply toshaws

Shaws thank you so much for this info. I see that particular medhelp member is no longer posting about her heavy head on that site so maybe it resolved for her and she was able to move on with her life! :)

My previous endo before this one was testing my Free T3s and they were always low, last one was 2.7 when the range is 2.0-4.4. I will be paying for my own testing soon and will post my new FT3 number here.

So if my TSH is still over a 1 and also my FT3 is low, what does that mean I need to do? Continue with my T4 only med or add T3 to this? Or switch completely to the NDT? Rather, what is the goal - to get the T4 only to work first?

I am just so scared because brain fog to me has been explained as a memory problem, not really a physical sensation, which is what I have.

Thanks again,

Rose

shaws profile image
shawsAdministrator in reply tothyroidrose

Many doctors believe that a TSH within range is fine but we, the patients feel better when it's 1 or below.Some even need it suppressed but a few doctors will not allow this as they wrongly believe we will have a heart attack etc. Considering that some people with thyroid cancer are kept deliberately on a suppressed dose I don't understand why they don't realise this.

FT4 and FT3s are important and you can read on the following link why:-

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

Both FT4 and FT3 should be towards the upper part of the range, not middle or below.

We have to read, learn and ask questions so that we can recover our health as many doctors don't seem to know much other than TSH. They also prescribe 'other medications' for clinical symptoms as they know none and don't think they could be connected to thyroid gland.

You will realise that many doctors don't know anything about symptoms of a dysfunctional thyroid gland and to frighten their patient is disgraceful. 'Brain fog' is a common problem and I am not medically qualified but think it is due to low Free T3. T4 (levothyroxine) is an inactive hormone and has to convert to T3, so we have to have sufficient but sometimes dose is kept too low to keep the TSH in range so we cannot convert to T4 to T3 (Active hormone).

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

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

thyroidrose profile image
thyroidrose in reply toshaws

Shaws thank you again, I will read this info. I am already watching the Motherhood Interrupted video and I can say without hesitation that this video has hit me very deeply. I also feel very robbed of the first few exciting years of my son's life, who is now 4. Also when Dana described her symptoms and said she was nearly hunched over from the fatigue, that really hit home with me as well, as that is how I would describe my current state. You have put my mind at ease, thank you so much.

shaws profile image
shawsAdministrator in reply tothyroidrose

Many women become hypo for the first time after childbirth and I personally feel very sorry for them. First they haven't a clue why they're feeling so bad and together with a new baby to too.I suppose a lot of doctors do not think of checking the women's thyroid hormones and will probably slap 'depression' down as a diagnosis with the appropriate medication when it is thyroid hormones that need to be looked at.

I hadn't delivered a baby - even then I was given umpteen diagnoses along with treatment for things I didn't have. All I needed was a test for thyroid hormones but that wasn't forthcoming until a first-aider suggested it to me and I then requested one. The GP phoned me two hours after the test asking me to come to get a prescription and also 'who requested you to get a blood test'. I said "I did".

thyroidrose profile image
thyroidrose in reply toshaws

Thanks for sharing your story, and yes unfortunately a lot of new moms probably think 'this' is how all new moms must feel. I did - I never knew that you weren't supposed to have strange fevers, bouts of dizziness, and lose an extreme amount of weight after your child was born. I chalked it up to not much sleep and breastfeeding bonanzas!

Honestly even then I wasn't complaining, but once the hypo kicked in fully I was at the doctor's office. Headaches for days and just the wooziness, my gawd. Unfortunately when I went for help that was two years into the ordeal. I probably suffered way more than a normal person would before they went to the doc, as I hate going.

In fact if any new moms are reading this and feeling like I felt, run to the doctor and begin the process. The sooner the better.

Also wanted to add that I did get lucky, my GP did a full panel of testing when I finally went in that revealed my TSH was high, then he ordered the antibodies, which confirmed Hashimoto's. But I know others aren't so lucky.

Gr8Nica profile image
Gr8Nica

Sometimes I do get that heavy head feeling along with overall body heaviness (like someone is sitting on my shoulders) and that wooziness you described too. However it's usually after very little sleep or at the end of the day. And my T3 levels were always low so that might be it.

thyroidrose profile image
thyroidrose in reply toGr8Nica

Thank you so much Gr8Nica. Has the heavy headedness diminished since you have been treating your hypothyroidism?

Gr8Nica profile image
Gr8Nica in reply tothyroidrose

Not yet. I'm still not optimally treated. Just recently my dose has been increased and I believe it will need to go up even more. Also my low vitamin levels and iron deficiency anaemia has been addressed so I'm kind of at the beginning of my journey.

I do feel small improvements.

As it was suggested request a dose increase and ask for T3 to be added, if possible.

thyroidrose profile image
thyroidrose in reply toGr8Nica

I also had iron deficiency and am glad that is behind me! Thank you again for your responses, I appreciate them and will consider the addition of T3 if T4 never quite does it for me. So glad you are seeing small improvements, that is very promising.

Gr8Nica profile image
Gr8Nica in reply tothyroidrose

Make sure your ferritin levels don't go down again. From what I understood you most likely will need to take maintanace dose to avoid further outbreaks. Stable levels of at least 70-80. Stable ferritin = stable iron = stable oxygen levels to your brain = less dizziness and shortness of breath when you train e.g.

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